To Control or Not To Control

Nearly two years ago my mom was diagnosed with cancer. Since her 5-day stay in the hospital that summer, I've been thinking quite a bit about "control." Just how much of our life do we control what happens and just how much of our life do we think we actually control what happens? How much of our life is controlled by the schedule we want?

Just how much of our life is really at someone else's mercy, their cruelty or something else. How much of our life is not on our schedule, though we'd like it to be. So, I started to think about all the things where we are not in control, where we don't control the schedule. The weather. The mail delivery. In a restaurant. In a retail store. On the road. In the air. In a prison (although I've never been in one, except on a tour of Alcatraz). On a cruise or an all-inclusive resort (you know the kind, with a cruise director in charge of the schedule)!

And, in a hospital.

Let me explain what happened in a Fayetteville, Arkansas, hospital in May 2009.

A little background on my mom. At the age of 15 when her mother went back to work, some household chores fell to her. My mom cooked the evening meals and did the grocery shopping for a family of six. I believe this was on of the reasons my mom became so self-reliant. And, I'm sure that's where my mom began her "logistics and planning" career. It was also an early beginning on her ability to control a situation.

So, when my mom was hooked up to the myriad of monitors and IVs, she was (heck, we all were) at the mercy of the hospital staff. Everything from the pre-operating room to checking out of the hospital. And, my mom had become another person. She was no longer the independent woman I had known all my life. She was no longer in control of what was happening to her or around her. She had become dependent on the medical staff at the hospital. And, my dad and I were absolutely helpless to assist her. We had no idea how to disconnect anything that would enable my mom to leave her bed to use the restroom or go for a walk. We had to wait for the medical staff. We were not in control.

A serious situation developed when my mom was desperate to be disconnected and had become impatient. No doubt, my mom strongly requested my dad to unhook her. So, he did. Now, let me explain that when you visiting someone in the hospital, please remember that person is on medication that may cause the patient not to think very clearly. That the person's reasoning skills, their mental capacity, are greatly diminished.

I will never forget what I witnessed when I returned to the room. My mom was bleeding from where my dad had disconnected her central line. (A central line is basically a intravenous tube that is inserted and threaded through in a vein until it reaches a larger vein near the heart. Mom's central line was in her chest.) Blood. Everywhere. It was a scary situation. I have no idea how many minutes had ticked away. Luckily, and by the grace of God, by the time I returned a nurse had reconnected the central line. He then proceeded to tell us of a patient who had purposely pulled his central line and died. Yep. It's that serious. The nurse also chastised all of us, and for good reason, He did in the most merciful way. We should always call for the nurse to disconnect the medical devices. And, if necessary, soil the bed. That's right. Soil the bed.

Soiling a hospital bed is the epitome of not being in control AND experiencing an uncomfortable and embarrassing situation. Here's the kicker. Except, there's nobody around that will ridicule you for what happened. Instead, you receive the care, comfort and compassion of a dedicated nursing staff and your family. Talk about mercy in a helpless, uncontrollable situation.

I really like what Ellen Pompeo's character, Meradith Grey, said about control. In the second episode of season 7, before she could be cleared to return to surgery by a grief counselor who worked with the staff at Seattle Grace Mercy West hospital following the shooting rampage at the end of season 6, she said:

"I lost a baby. I almost lost my husband. And, my best friend may never recover. So, I don't care what you do. Clear me. Don't clear me. I have no control over any of it. I'm giving up."

To which the grief counselor replied: "Sounds like a good plan."

We think we are in complete control of our situation. In reality, we're only in control of what we do, what we think, what we say. We're not in control of other people. We can't control how fast the driver in front of us drives. We can't control the schedule for the Operating Room. We can't control how fast the nursing staff responds.

I think sometimes we lose control of our mental and reasoning capabilities. We don't think clearly. And, we don't have the excuse of being on mind-altering medication.

The thing I've learned: we can be appreciative of the hospital staff. We can be thankful we're not in an accident. We can be thankful we're able to eat at a restaurant without having to plan, cook, serve or clean up from the meal. We can be thankful for those who have extended mercy to us. We can be merciful to others even when other people are anything but merciful. (Cruel and stupid come to mind...) We can simply relax.

Vulnerability

I watched my mom with a careful eye yesterday just before she was released from the hospital.

She had to lie flat on her back for 30 minutes after the wonderful nurse removed her central line. Mom had closed her eyes. She looked at peace. And, she looked vulnerable.

She wouldn't be able to act upon anything that came upon her. And, for the first time, I saw my mom as how she will eventually look inside a coffin at her funeral. I'm not trying to be morbid. In a way, I think the events of the past few months have been preparing me for the inevitable. That, I will one day, bury my parents.

Seeing my mom the way I did and thinking of what lays ahead, hopefully, in the very distant future, is not something one should have to picture of their loved one. It's a reality that we're not exposed to on a regular basis. And, when it happens, it slaps us directly in the face. In a place where it will hurt. And, hurt for a very long time.

Today, I have my mom. She's moving gingerly around the house, without the aid of a walker. She's excited about travel plans to some national parks later in July. She's excited about her second grand-daughter being close by at the University of Arkansas later this fall. She wants to live .... until she's at least 100.

For now, I'll just take things one day at a time. And our vulnerability, I'll leave to someone greater than me. He'll keep me safe and protected. He's in control. That's what matters.

Educating Connie

In September, my husband and I took a class titled, "Strength-Finders". My top strength is Learner. Meaning, I love to learn things. It's the process of learning, not necessarily what I've learned, that I enjoy. One of the my other strengths is "input". I collect things: photos, postcards, information.

Here's how they've played out the past few months since my mother's diagnosis. When we first learned my mother's cancer was a certain type, the family began our collective research project finding all possible information from the internet. I tried to stay with websites that I knew I could trust for medical terminology. The more I learned, the less I wanted to know. To the untrained medical person, liver cancer is liver cancer. To the medical person, it was adenocarcinoma. Again, I didn't like what I learned -- where liver cancer (or adenocarcinoma) originates, treatment options, life expectancy. The tumor is inoperable. It wasn't very good.

After more tests showed that the liver cancer didn't originate somewhere else, now it was called cholangiocarcinoma. That's still liver cancer to you and me. It means the treatment is different - the tumor is operable. Life expectancy is longer. Instead of months, we now have the possibility of 3-5 years.

Today, my mother was scheduled for surgery. Was scheduled. It's been delayed for two days because of blood. More stuff to learn about. More stuff I don't want to know. Stuff about blood antibodies and antigens.

Sadly, I'm only interested in all this information because of my mother's cancer diagnosis. I have no desire to know more about it. Nor do I enjoy learning about it. I am, however, thankful that there are people who have a passion for medicine, who want to learn and know about various cancers, antibodies and antigens.

There were days I had to hold myself back from researching "cancer". My brain ceased to process the information. I couldn't arrange the information I had collected into something I could deal with. (I needed someone who's strength is Arranger). Honestly, I didn't want one. I wasn't going to Arrange my information into a pretty hard-bound scrapbook that I would get out on a regular basis to "re-live" the experience. I want this to be a one-time, short-term experience.

There has been some comfort in all this cancer research. Modern medicine has made great strides in cancer diagnosis and treatment. Patients are living longer. People are becoming more aware. Cancer is more prevalent in our society. More people are diagnosed with it. Family and friends of cancer patients are telling their experiences, sharing their successes. It's encouraging for me. That's what I hope this blog does for others: that it encourages them.

We live to battle another day!

The Role of My Mother

When I first found out about my mom's cancer diagnosis, one of my pastors gave me a book, "The Grief Recovery Handbook" by John W. James and Russell Friedman. The phrase: All relationships are unique, no exceptions. I took the information one step further -- all relationships are unique because each person in the relationship is unique.

Somehow, I started to think about the roles my mother has played at different times throughout my life. She has been a teacher, nurse, comforter, colleague, mentor, friend, parent, nurturer, protector, defender, disciplinarian. These roles are very similar to another parent, but that's another story for another time.

As a teacher, my mom taught me how to tie my shoes, bathe myself, dress myself, walk and chew gum (okay - that one needs some more work - haha), ride a bike. Later in life, she taught me how to drive a car, do laundry, cook, clean, and balance my checkbook (all without the aid of a calculator or computer software application program).

As long as I was in school, and dependent upon them for my basic needs, my mom was my parent, not my friend. We didn't "hang out" together on a regular basis. We didn't "giggle" like little girls together. She didn't go with me to roller skating parties or Saturday morning bowling. That's not to say she wasn't friendly. But, her role at that time in my life was as a parent. The friend would come later.

When I graduated from college, moved to Southern California with my parents, and began my career in civil service, we become colleagues. She always had the higher pay and the "manager" title that went with it. She was never my boss. We were never on the same program and I think we only attended one or two meetings together. We had separated our familial relationship at work where others had not. At work, she was Mary Jo. I referred to her as Mary Jo even though I never called her that to her face. At home, she was mom.

What roles has your mother played in your life? Have you thanked her? One year for my birthday, I sent my mother a rose for every year of my life. It's idea I borrowed from my high school speech teacher's son, who sent his mom one rose for every year of his life.

Our relationship hasn't always been easy. Again, that's another story for another time.

Suffice it to say, our relationship has weathered some pretty rough times.

Recently, I asked her her if there were any unresolved issues in our relationship. A topic broached only because of a broken relationship with one of her younger brothers. She said "no - we're okay." And, we are.

What kind of relationship do you have with your mom? If you have a broken relationship with your mother, daughter, sister, brother or anyone else, take the time now to resolve those issues, while you're both alive. As I've come to realize all too quickly these past few months, time is not always on our side.

Once A Mom Always A Mom

Even though I'm well into my 40s and quite capable of doing things, my mother somehow keeps reminding me to "be careful." It used to drive me crazy. And, I would always reply in exasperation, "Mother!"

Well, that's just it! She told me in oh so gentle words, that she will always be my mother. "Once a mother, always a mother," she told me. She said she would always be on the lookout for danger - and tell me to be on the lookout as well.

Case in point #1: When I was younger, and long before child safety restraints and rules requiring children to be buckled in the back seat, I would ride in the front passenger seat. As mom slammed on the brakes to avoid approaching danger, she would quickly fling her right arm out and barricade my body from being thrust into the dash board and out the front windshield. She still does that. "Once a mom, always a mom."

Case in point #2: When I would help her in the kitchen, she would caution me to be careful as I opened the oven door. "Be careful," she would say. When I had a home of my own, and my parents visited, I would be busy preparing dinner. Mom would help or stay out of the way, depending on how elaborate the meal was. As I opened the oven door, she would say, "Be careful."

Like I said, it used to drive me crazy. Within the last couple of years, it has become a point of laughter for us. Now, when she flings out her right arm or says "Be careful," I just looked at her and lovingly say, "Mother." And, we laugh.

Role Reversal

My mother has always been there to take care of my illnesses. I remember she made a special trip from California shortly after my husband and I bought our first home. I had surgery to improve our chances of conception. Mom took care of the details of our home: the cooking and cleaning. She was also my nursemaid - checking my temperature, reminding me to drink plenty of liquids, reminding me to eat, being careful when walking down the steps. She drove me around town until the doctor cleared me to drive. She even helped bathe me when I couldn't reach certain locations.

I never had children. So, I never had the opportunity to be a mom - to nurture a child to adulthood. To witness the pain of growing up. To witness the joy of reaching maturity.

I do, however, play "mom" to my 8-year-old border collie flat-coat retriever mix dog.

Now, I'm a mom to my mom. I'm the nursemaid. I'm doing the cooking and cleaning of the house. I'm driving her around town (a place I'm not very familiar with) so that she can attend to her "normal" routine: a haircut, attending the community theater. I'm making sure she has plenty of water to drink, preparing a cup of bouillon to warm her from the chills. I'm reminding her to take her anti-nausea medication and supporting her holding the glass of water as her hand shakes uncontrollably.

I know why my mother did it - out of love. That's why I'm doing it - out of love.

Mixed News

I think I may have misspelled Agnes. Regardless, we're still going to fight. The PET scan did not show where the "mother ship" was located. Just a few hots spots in the lymph nodes on her neck. On Monday, Mom asked about a blood test that was done several weeks ago - it's the pancreatic cancer marker. It wasn't elevated, which could mean that the cancer didn't originate in the pancreas. But, we still don't know for sure.

There's a possibility the tumor is a result of another type of cancer, which is a bit more hopeful.

Mom will have a transfusion on Thursday morning to prepare her for chemotherapy beginning Friday (GOOD FRIDAY). Significant - could be. There are no coincidences where God is concerned.

She won't lose her hair, which is a good thing; although in way I was looking forward to going shopping for wigs, hats, scarves. What fun that would have been! Not that I think anyone who deals with cancer would think anything about it is fun. But, it doesn't mean that life should come to a standstill. Every waking moment doesn't have to be grim or sad. Enjoy being alive! Enjoy spending time with one another.

I wish this wasn't happening. As I posted on my Facebook status a few days ago, if this is the hand that I'm dealt, well then, let's play cards.

Speaking of cards, Mom & I took on Jeff and my Dad in a game of Hand & Foot. We lead the entire game and came out victorious. Mom is prepared to fight this cancer - to fight that hand she's been dealt - and we will all come out victorious!

Getting back to the chemo - she has her first round on Good Friday. A week later, another round. And, I believe, if she's able to handle the treatment, they'll add something to the therapy. Surgery could be a possibility if the tumor is a different type of cancer. It will depend on her age - and she'll have to travel to have the surgery.

Please pray for: Strength for the chemotherapy. That the treatment will reduce the tumors. Pray for wisdom for the pathologist as he reviews the slides from the liver biopsy. Pray for clear results. Pray that the tumor is from the other type of cancer. Pray that she will be strong to withstand surgery at her age. Pray for time. Pray for strength, comfort and peace for all of us. Thank God for giving us this time to be together as a family. Thank God that tests so far reveal it's not pancreatic cancer.