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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Changing to Something Better

From the last post, you know the mets in Russell's brain are getting significantly worse. For those of you who are new, it has been progressing over the last month.

Yet Another Prescription

This one will take the place of his normal anxiety medicine. For all who take medication, each time your doctor proposes you take a medicine, ask him which medicine it will replace and why it is better for you than the one you already take. This is especially necessary for children who take everyday prescriptions.

While this medicine is far stronger, it also takes care of quite a few other things: Some of the tremors; some of the overactive dreaming which interrupts sleep (his and mine); some of the chemical imbalance in his brain; deactivating some of the neural pathways which make his brain function improperly.

More Hands

With the arrival of Momma and Poppa, I have more hands to complete tasks left neglected lately. One more task was added to my itinerary last night...a trip to the pool with the children. Never, ever underestimate the power of water to produce sleep in children...never.

More Eyes

With Poppa and Momma being able to watch out for Russell, I can spend today in the yard ensuring the pooches stay in the yard all the time! What a relief it would be to have them outside on a permanent basis!

It is all about family.

We are a unit and work in the same manner as the military. We are cross-trained to do jobs for one another and watch out for jobs which otherwise might fall through the cracks. Most fun, I am scheduled for a hairdo and a nap. Family is great!

Chin up!
Ann Marie

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The Mind is Willing?

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

Somewhere in the Middle

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

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

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

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

What you heard was not what I said.

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

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

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

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

Who are you?

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

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

Remember what matters.

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

Stay strong,
Ann Marie

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More of the Same?

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

And the doctor says...

More of the same.

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

So, that changes what?

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

Coming Full Circle

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

Making Sure to Remember

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

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

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

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

Write that down!

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

Time to dance,
Ann Marie

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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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