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

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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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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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Little pictures have big ears. -Archie Bunker

Children: small human beings who delight and confound simultaneously.

Traveling the path of cancer treatment with children is strange and enlightening. There are pitfalls which (when you cannot avoid them altogether) you need to remedy quickly.

Unexpected Behavior

Depending on the age of your children, this includes everything from crying at the idea of a class assignment to refusing to participate in beloved activities. Identify the behavior tentatively. Do not assume the behavior is necessarily attached to the illness, but never assume it is not.

Doctor visits/Hospital stays

Children can easily deduct going to the doctor or hospital means Daddy is not going to be at home to do all the things he does with them. Be certain to reinforce the doctor and hospital are both to make Daddy feel better, so he can come home and spend time with them.

Let the doctor and the home health professionals talk to your children about how they are making Daddy feel better.

Medicinal Side Effects

When you get out the spoon and the cough medicine, expect a different type of lemon-sucking face. Daddy's medicine makes him sicker than your child perceives he is. Cancer is not easy to see, like a scraped knee. How the medicine works is a complete mystery, unlike a cast on a broken arm. It is not unusual for children to want to forgo their own medicines when they see a parent seem sicker after cancer medicines, especially chemotherapy/nausea & radiation/hair and weight loss.

Explain medicine like food in the stomach. Children understand food in the belly early. The medicine goes in and makes the "hungry" go out of the cancer.

Loss of Interaction

Daddy does not feel well enough to be out in the yard throwing the tug-o-war ropes for the dogs or sit and magna-doodle with them. Some days, Daddy cannot even endure the 300th airing of the Disney movie du jour. Be sure to arrange one-on-one time with each child. Do not point out this is replacing "Daddy time".

Questioning Faith

Perhaps one of the hardest struggles is answering the question, "Why is God doing this to Daddy?" Use your faith to answer honestly. God is not "doing this to Daddy". God is bringing Daddy to Heaven, so He can spend time with him. Tailor your response to your child's level of understanding.

Consider having your pastor talk to the child about this as well.

Money Concerns

Financial concerns are often attached to cancer treatment. This is one of the issues you can avoid. Choose to have these discussions while children are at school, out of the house or asleep and definitely out of earshot. This should apply to all families, even those not dealing with a catastropic illness.

You are absolutely not alone.

Do not for one second believe you have to shoulder all of the burden of coping with your child's issues with this disease. The more people you have helping you reinforces the extended family support your child needs right now.

Talk to teachers and guidance counselors. Talk to babysitters and day/after care centers. Talk to church family, especially Sunday school teachers and the pastor. Talk to neighbors. Talk to your child's friends' parents.

They should expect behavior changes. Be certain they know how YOU want them to deal with outbursts. When the time comes for one-on-one time, allow some of these responsible adults to take you child for special time.

Talk to the other parents in your cancer support group. They can help you identify other issues they may have had and how they dealt with them. Allowing children from the group to play or study together gives them the opportunity to talk about how they feel without feeling like they have to explain it to an adult. This peer counseling is healthy and important.

Chin up,
Ann Marie

Picture: Veronica on Russell's shoulders touching the ceiling after attaching Christmas decorations to the vaulted ceiling beam.

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Video Games!!!

"How old are you?"

You have no idea how many times Russell asked me that before he figured out that I was just engaging in a distraction technique. Now, he tells me to go whack someone (in Mafia Wars).

While I am playing games, I am not thinking about anything except the motions of my hands and the images on the screen. Contemplate distraction...

• No worrying.
• No "what if".
• No stress.

Is there a secret to it? Well, of course there is. If there weren't, your psychiatrist would have told you about it and lost his fee.

Choose a distraction which builds self-esteem or confidence, does not cause anxiety or stress and engages or (in my case) disengages your brain. Need some suggestions?

• Video games where you play free style (no opponents or timers)
• Meditation (sense of well being)
• Exercise which does not cause pain (sense of self-confidence)
• Hobbies, especially ones which craft a finished product (sense of accomplishment)
• Visiting, especially someone who has no one else or is having a hard time (sense of perspective)
• Reading
• Driving with the window down or the sunroof open
• Bathing, especially using aromatherapy
• Massage or salon care
• Journaling, blogging or writing
• Pet care, brushing and petting

Need some things to avoid?

• Eating, and cooking unless you are doing it for someone else
• Drinking alcohol (It is a depressant.)
• Narcotics, prescribed or illegal
• Speeding
• Visiting people who contribute to your anxiety or stress

If you are stressed, how are your children feeling? Remember, children (and pets) are very attuned to your stress level. Since they depend on you, take care of their mental health as well.

Schedule regular exercise and social activities for and with your children. Use stress relieving deep pressure or massage while you speak to them. Cuddle.

Play. Yes, strap on an eye patch and make yourself a cardboard sword (or grab a pool noodle) and live the pirate life with your children. Who cares how ridiculous you look? Your children do. They know to trust your guidance when THEY can relate to your inner child.

So, when you are tired of being an adult...stop.

There is absolutely nothing wrong with return to the mental time when the only thing you worried about was being caught (even before the forensic science boom) putting the muddy shoe prints on your mother's freshly mopped linoleum.

Chin up,
Ann Marie

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While the cat's away...

...the mice scurry to prepare for the winter of despair.

And scurry I did:

• Chores left undone beget sparkling surfaces.
• Allergens became an indoor endangered species.
• The bedroom was transformed into single space living quarters.
• Memorabilia of a fonder time was posted at every corner.
• Family portraits (my anniversary present) arrived and were proudly displayed.
• Thank you notes purchased.
• Funeral arrangements explored.
• The telephone battery was worn dead each day. (Many thanks to all of those who listened, advised, prayed, cried, made me laugh and had the courage to change the subject.)
• A million tears fell.
• Emotions ran high.

I knew I needed to run the full gamut of emotions before Russell got home...then, I would have to be the strong one for everyone. Why? My role was going to change.

I would no longer be allowed to show my dread. You see, it is not fear. Those close to me know I have absolutely no fear, truly: NONE. I am so confident, at 20 I was declared DNR. (I inserted that link for a reason.)

I had to execute an intricate strategy to ensure the least amount of disruption for my family. For instance:

• Plan how to explain to my pregnant daughter our first grandchild may not be born with a grandfather.
• Plan how to encapsulate the epic battle with the South Carolina Department of Education (We will blog that later.) so as to prevent its intrusion into his more delicate times.
• Plan how to procure another profession of faith. I could not bear thinking my husband would not enter the Kingdom of God.
• Prepare all of the therapists and the school of the scheduling disaster area which was well on its way to becoming routine.
• Comfort some of our care givers who would be party to Russell's illness.
• Mentally prepare for the conversation of final wishes and wills.

How did I pull this off? I am not a miracle worker, but I have friends and family who are. I talked to those who are my dearest friends. I cried on the telephone with my mother and sisters. I prayed with everyone who would pray with me. I spoke to the pastors. I emailed my globe-spanning prayer chain. And I played a lot of video games.

Next time we will talk about the value of distractions...for everyone.

Ann Marie

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What a month can mean!

January brought a PET scan to see the cancer activity in Russell's body.

Excuse me, I needed a break after that last sentence. The results were what most people commonly refer to as "devastating".

The four spots of mesothelioma had grown together and were encasing 80% of his right lung. This is a point from which there is no return. The pleura thickening was at nearly an inch. His right lung was at less than 30% capacity.

The adenocarinoma (frequently hereinafter called "the tumor") has destroyed another rib and was headed for a third in short order. This meant the cancer was leeching into the bone marrow. Another point from which there is no return.

Russell made the choice to undertake chemotherapy. He asked the doctor, "Are we talking months or years?"

With pain in his expression, our friend had to reply, "Months are closer." The tacit portion of that sentence was "to the weeks which are the appropriate answer to the question".

Immediately, we schedule the surgery to insert a port into his chest. Arm veins are not prepared for large amounts of poison. Routine outpatient surgery...oh, yeah, right.

Even this did not go as expected. He lack of oxygen provided recovery complications. His will prevailed. He kept his eye on the prize: A trip to New York to see his sister and his children.

Less than 48 hours later, I drove him to North Carolina to face his fear of flying. Practicing better living through pharmacology, he made the flight to NY. When he called me from the car on his way to his sister's home, he sounded like a little boy with a new toy. Family is the best holistic medicine.

The whole week was filled with family dinners and a little dining out. Loads of telephone calls and a lot of air cleared. Eyes wide open, he told me, "I hate that I have only come home to say, "Goodbye."

Let the chastising begin. "No, you are there to enjoy your family and make wonderful memories. Enjoy yourself or when you come home, I will beat you until I feel better." Knowing full well what my stress level was, he knew the beating would likely not be survivable, even for a healthy boxer.

As much fun as he had, he was glad to be home. I had stipulated he be home for my birthday. (Refer to last post for the reason why.)

Next, we will talk about how I spent the time he was in NY.

Until then,
Ann Marie

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Christmas Cancer?

December is normally filled with Christmas decorating, indulgent baking, wrapping paper flurries and the occasional snowflake. Not this past December.

Russell was complaining of chest pain. Not the usual, "OMG, we HAVE TO go to the hospital," kind of chest pain...a dull, nagging pain. So, the battle of wills began. On a Friday, I told him: You have until tomorrow to get out of the bed and do something around the house or you are going to the hospital."

So, what do you think happened? That's right. He did not get up. On Saturday, he said (again), "I don't feel good enough to do anything;" to which I replied, "Then get in the car so I can take you to the hospital."

"I don't need you to take me anywhere. I'm a big boy;" (Let that sink in for a second...it only took me 2.4 nanoseconds.)

"Then, get in the truck and go to the hospital. If you cannot take care of yourself, I have to do it."

Now that he was painted into a man-ego corner, you guessed it...He went to the hospital. It was December 11th.

Six hours, two chest x-rays and a thoracic CT later, he came home with a pending diagnosis of mesothelioma (He was admitted as COPD.)

I went to the doctor alone to get the CT results. We got the oncology referral and set a date for needle biospy for the apparent adenocarcinoma (of the lung). The tumor had broken one rib under his shoulder blade. The pain he thought was in his chest was actually the tumor pushing his lung forward. The broken rib was destroyed along with most of the nerves.

Four growths of mesothelioma were present on his right lung. His pleura was thickened in all four places. Some places as thick as 1/2 inch. There were 8 affected lymph nodes. This was the pain he felt under his arm.

It was December 21st. I made the decision NOT to schedule the oncology appointment before Christmas. I chose December 29th instead. Russell speculated the reason the appointment was so far away was this would be his last Christmas, and the doctor (a close personal friend of ours) did not want to spoil our holiday. To a large degree, his speculation was warranted. I had told the doctor I was going to have a good Christmas with my family. Cancer be damned.

If I had it to do again, I would not change my behavior.

With the speculation in his hypochondriac mind, he focused on the little ones and the presents under the tree. He watched with childlike wonder as the piles of paper stacked up. He was busy extricating toys from adult-proof wrappers. He was in charge of battery placement. He learned to operate my new digital camera. He even enjoyed the dogs fascination with the whole affair. Russell enjoyed Christmas.

All I asked the prayer chain to pray for...peace in our house. The Lord listened. It was a joyous holiday like no other we have had.

Next time, we are going to discuss the whirlwind which can happen in thirty days.

Carrying on,
Ann Marie

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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

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