Kerby's Story

Faith

2006-09-28T06:57:00.000-04:00

Nothing in this life is permanent. Situations no matter how difficult or trying last forever, and people no matter how much you love them will ever escape this world alive. On September 11th at 5:25pm Kerby slipped away from this world, at home, surrounded by his family. Kerby’s long struggle with cancer ended on that day, but one could not say that cancer was victorious. What separated Kerby, what defined him, his life, and his day-to-day existence was his faith. Faith in God, faith in his family, faith in his friends was the core of what allowed Kerby to live and die with respect, dignity and an overwhelming belief that death was not the ending, but indeed a new beginning.

Faith was not a noun to Kerby, something that meant to simply believe. Faith was a verb, an action statement, calling out to be realized, to be acted upon. I can honestly say that I learned more about living from Kerby’s dying than I have in the previous 38 years. What I learned from was to have faith, to simplify, and to love. Kerby excelled in all of these. Even when cancer was taking away his strength, his energy and his life, he never once complained to me. When I asked him if he was in pain, his answer every single time was same…“I feel a little pressure.” When faced with daunting task of planning for a future that he would ultimately not be a part of, he had faith that God would provide, but also knew that did not mean sitting around and waiting for it to happen. When we would eat lunch together, his phone never stopped ringing. He always answered it as if the person on the other end was his closest friend, and always with a smile. These calls were supposed to be from other people calling to give him strength and solace, but I always got the feeling that the person on the other end of the line got an equal measure of what they gave. Kerby had a way of doing that, of turning the tables on you. Just when you thought you were the one providing a shoulder to cry, or laugh on you felt your emotional tanks being filled.

Above all I know that Kerby had faith in where he was going. It was that faith that gave him the strength to let go. He had faith that his place was with God, faith that his family would continue when he could not continue with them, faith that his friends would remember him and hold fast to the memories that they shared.

Kerby’s favorite Hymn was “How Sweet to die.” I think it is fitting and succinctly says what he would tell each of us about life if he had the chance to do so.

Farewell, vain world, I'm going home, My Savior bids me come
Sweet angels beckon from on high
Then, O how sweet to die

I'm glad that I am born to die, from grief my soul shall fly,
Sweet angles beckon from on high
Then, O how sweet to die

I'll praise my Savior while I've breath, I'll praise Him after death,
I'll praise His matchless name on high
Then, O how sweet to die

I soon shall pass this vale of death, when I shall lose my breath,
And then my happy soul shall fly,
Then, O how sweet to die.

Liver Encephalopathy

2006-07-30T18:01:00.000-04:00

Liver Encephalopathy

(self diagnosis, which is why it isn't good to be an internet doc!)

Liver encephalopathy (portal-systemic encephalopathy, hepatic encephalopathy, hepatic coma) is a disorder in which brain function deteriorates because toxic substances normally removed by the liver build up in the blood.
Substances absorbed into the bloodstream from the intestines pass through the liver, where toxins are normally removed. Many of these toxins are normal breakdown products of the digestion of protein. In liver encephalopathy, toxins are not removed because liver function is impaired. Also, some toxins may bypass the liver altogether through connections formed between the portal venous system (which supplies blood to the liver) and the general (systemic) venous system as a result of liver disease. A surgical bypass (portal-systemic shunt) to correct portal hypertension may have the same effect. Whatever the cause, the outcome is the same: Toxins can pass to the brain and affect its function. Exactly which substances are toxic to the brain is not known; however, high levels of protein breakdown products in the blood, such as ammonia, appear to play a role.
In a person with long-standing (chronic) liver disease, encephalopathy is usually triggered by an event such as an acute infection or an alcoholic binge, which increases liver damage. Or encephalopathy may be triggered by eating too much protein, which increases the levels of protein breakdown products in the blood. Bleeding in the digestive tract, such as from dilated, twisted veins in the esophagus (esophageal varices), can also lead to a buildup of protein breakdown products, which may directly affect the brain. Certain drugs—especially some sedatives, analgesics, and diuretics—may also trigger encephalopathy. When such a precipitating cause is removed, the encephalopathy may disappear.

I am trying to post once again on my blog. This has been extremely difficult for me because my brain function is having a difficult time maintaining some sense or normalacy. I have been on the computer I know for hours today trying to get this done. It is ironic how my brain seemed so withit and now I can't seem to formulate an opinion. Appraently from what I am getting the toxins are becoming hard to deal with. I am told by my brother (hospice nurse) normal. I work a lot at trying to keep things in order in my mind. I am falling more than I desire and have obtained a walking cain so I dont end up in an ERI situation unnecessarily. I am taking morphine and that seems to knocking a bit of the edge off. No pain to speak of, rather I know this body cannot take a whole lot physically. Course, been proven wrong before. Sorry about all the type'0s and hope you can read betweeen the lines.

God continues to give me a great amount of strength. As Margaret has said, I am working on not letting brusises take over my every bump into the wall. Keep us in your prayers... as I know you have. ICE CHIPS are my buddy right now. along with all of your and your strength.

Love to all. Will help to keep you up to date as I am able.

Much love,

Kerby

Beach Bound

2006-06-15T07:00:00.000-04:00

I recently found out my cortisol levels are still up, so we are taking my meds to the maximum to reduce the cortisol. Hopefully it will work as the next step will be to add different meds to control the Cushing's Monster. My liver function is beginning to show some signs of deteriation from the tumors taking over my liver. This is to be expected. I am up to 38 pills per day at my last check. Quite a few pills, but at least it is keeping my quality of life up.

Kris has planned a week get-away to the North Carolina coast for our summer vacation with the children. We will be leaving early tomorrow morning (Friday). I am going to take some extra pain meds to help with the travel down and back so I can be as comfortable as possible. The children are excited about our trip and I anticipate some good memories from this trip. I cannot begin to express the blessings we continue to receive from God. This trip could never be possible except from the wonderful giving of close friends. Until we return...

Doctor Visit This Week

2006-06-10T05:03:00.000-04:00

I went to the good doctor this week and we looked over the latest CT scans. Certainly have grown quite a bit from three months ago. We also have changed the pain meds to something longer acting so I won't have to take the vicodin quite as often. Not in any real pain just continue to be uncomfortable. The meds are helping a lot. We also are in the process of having my cortisol levels checked again to make sure it is in the normal range. These tests will be continuous to help maintain the best feeling of health possible. My sleep is much better, but am tired still a lot. Of course I am always saying I am fatigued, that won't change anytime soon. My wife the kids and I are planning a trip to the beach next week and with the new meds I am hopeful getting there won't be too much drain on my body. Once we are there I can sit back and just relax. It will be great for the kids to have a summer vacation away from home, and they have always enjoyed the beach. No complaints here. I am blessed to be where I am and have such wonderful support from friends and family.

A Little Uncomfortable

2006-06-01T17:47:00.000-04:00

I am not feeling as well lately. I had a CT scan done last week and the results: "the tumors are growing". No surprise to me as I am feeling them more and more, especially in my back and side. I am very thankful for Vicodin (pain meds) of late! Waking up these days I don't feel good so I take some Vicodin and feel much better with-in an hour or so. I take a couple of them through out the day to smooth things out.

I am not in any significant pain to speak of. More annoying pressure than anything. Sleep has been some what erratic, but what is new? I sleep okay some nights, other nights I don't. I take naps some days and others I don't seem to know how to get out of bed. I suppose it is just the nature of the beast.
I am very thankful to have the ability to be home with my wife and children and relax as much as needed. No pressure when I am unable to get to sleep or sleep poorly.

God is so gracious to me and my family. I often wonder why, but am so grateful.

Better sleep...

2006-05-23T08:51:00.000-04:00

Saw my endocrinologist last week and found out my cortisol is up as expected. We have doubled the amount of meds for reducing the cortisol with the hopes we can continue to keep it under control. I have been sleeping a lot more lately. Probably a good indication the meds are working. I can feel more and more pressure from the tumors in my liver, although I am very blessed not to be experiencing any pain with the exception of the occasional headache. God continues to bless our family more than we deserve. We appreciate everyones thoughts and prayers for us, they are being answered.

Angel Lily

2006-05-13T04:19:00.000-04:00

A very good friend of mine recently lost her mother to MS. My wife and I bought her a Peace Lily to keep in her home as a reminder of her mother. The first flower that came out on the Lily opened like wings of an angel. I took some pictures to share. A little camera magic for the halo. :o)

Cushing's Monster Returns

2006-05-03T05:46:00.000-04:00

I had some blood tests done last week, fairly routine for me. We have learned my cortisol levels have increased once again, so I am upping the amount of meds to reduce the effects. No surprise to me. You never know as the cancer grows when things will change. I am hopeful to get my sleep pattern back to some since of normalcy. I am thankful to God everyday to have time at home with my family and be able to rest as needed.

Caring Hands

2006-05-01T03:40:00.000-04:00

This is a picture of my hand with my youngest daughter I took.

My journey

2006-04-15T22:57:00.000-04:00

The year 2004 began like any year for me. I spent time with all the priorities in my life: family, church, work and exercise. Exercise was how I relaxed and I spent a lot of time and effort doing it. I had been an exercise fanatic, cycling approximately 200 miles and swimming 6 miles per week at my peak performance over the past 12 years. I owned a successful dental lab, which I had purchased 2 years prior after being an employee there for 17 years. At age 39, with three young children, a beautiful wife and a successful business, the future was nothing but bright.

As the year wore on, the stress of owning a successful business seemingly began to take over my life and my body began to show it. My weight started to increase, despite the intensity of my cycling and swimming; I wasn’t sleeping well and I suffered a lot from fatigue. I often woke up in the middle of the night with my heart racing. “I have to get myself under control: surely I can manage the stress better than this,” I thought. So I started running three times a week and playing tennis as a way to regain control over my life. I wanted to be the best husband and father I could to the family I loved so much. I wanted to have a successful business. I wanted to be a respectable person. I wanted to be in shape.

By August 2004, the fatigue and weight gain I had been experiencing was worse, not better, even with the additional exercise. I began noticing edema in my legs and ankles. I finally called a cycling friend, who is also a local physician, made an appointment to see if there was something to help me get things under control. I remember thinking how silly and embarrassing it was that I was at a doctor’s office for being stressed out and gaining weight. After discussing my symptoms with him, blood being drawn and answering a plethora of questions, I asked; “Well, what do you think?” Without hesitation he responded, “Cushing’s Syndrome, but we will need to take this one step at a time to find out exactly what is going on.” Cushing’s is caused by the overproduction of the hormone cortisol resulting in fatigue, weakness, sleep disturbances, weight gain and muscle loss among other fun things. Just one week from my doctor’s appointment, I found myself being squeezed through the tight opening of an MRI machine to take internal pictures of my abdomen. The radiologist reminded me it would be a week or so before I got any results, unless something of significance was found.

But it wasn’t a week, it was that same day that I received a call, “Kerby, you have a mass, a tumor found on your adrenal gland. As with all tumors there is a chance of malignancy”. I accepted the news with some sort of relief as it validated the reasons I was not feeling well. Three weeks later I was at Winston Salem Baptist Medical Center being prepped for major surgery to remove a 14cm mass in my abdomen attached to my adrenal gland along with part of my diaphragm since the tumor had some adhesion to the muscle.

For the next several weeks, I was left in a sort of limbo while awaiting the pathology report. When it came, the report was not good: it stated that the tumor was indeed malignant and not only malignant but a highly aggressive and extremely rare form of cancer called Adrenal Cortical Carcinoma (ACC). Being an info freak, I began to study on the Internet, finding out, unfortunately, this cancer has an extremely high chance of recurrence (80%) and that currently, no successful treatment options were available.

I knew in my gut that I would battle this force again; it was just a question of when. I didn’t have to wait long for the next encounter. Less than three months later, in November 2004, I had a follow-up CT scan, which now showed metastatic lesions in my liver. The ACC had spread. I was told I had months to live and needed to “get my affairs in order”.

But what about treatment options? Treatments for this disease are of an experimental nature. Since I had done a lot of research concerning the different options (or lack thereof) for ACC, I knew this cancer had a mind of its own and once it has metastasized to my liver the options for any kind of recovery was minimal at best. In 2002, I had watched my best friend and boss die from cancer metastasizing to his liver. He tried some experimental trials to control the tumor growth, which did not accomplish anything, except to diminish the quality of his remaining life. I remember this all too well and could feel him tapping me on the back of my brain, telling me to “remember”. So my decision was made. I would let the cancer take its own course. No treatments. I spent many hours studying this newfound disease taking over my body; my wife and I would spend many hours discussing options and prognosis of this illness. Thankfully she felt the same way I did about my desires to maintain quality of life for the unknown amount of time we would be together.

Kris, my wife, and I were together with the physician when we got the news that my cancer was terminal. It was a difficult day for her. Her future of us vanished, as she knew that eventually this would take me away from her. There was not much I could do for her. You know … in your life being married, you share and struggle together through all the conflicts arising from life’s trials and tribulations. Having a terminal disease is something that is separating us as a couple. I won’t be here to help in her time of need. It is the ONE thing in our marriage we will have to do separately. Although we spend time talking and grounding ourselves, in the end it is she who will have to carry on.

We waited to tell the children until after Thanksgiving. We sat all three of them down and began telling them how sick Daddy was and that I would probably get even sicker. I was trying to stay away from the word ‘die’. Then the youngest of the three finally asked, “Daddy, are you going to die with this sickness?” What a huge pill for me to swallow, as I didn’t expect to be asked this question and certainly not from my youngest child. I wasn’t trying to hide anything, but I also didn’t want to hurt them. My answer was tough but truthful, as I did not want any surprises so early in their young lives. “Yes, daddy will most likely die from this cancer which grows with-in me, but we have this time together to enjoy each other and appreciate each day,” was my heartfelt response.

Visually they did not appear too upset. I thought, “Hey, this is going well:” The next thing I knew our youngest child had disappeared behind the couch in the living room and was sobbing. My oldest child began crying as well and was very sad. I was relieved they were able to express their emotions. It was a tough experience for us all.

In other talks with my children since we broke the news to them, I have taken great efforts to explain that Daddy is just going on a trip, and one day we will all be in paradise together, never to part. I am hopeful they won’t be afraid of this thing we call death. We are taught at an early age how “awful” death is. I wish to break the myth by sharing with my children and others around me this gift of tremendous strength I have been given. I hope to instill in my children a sense of calm and not let them see some kind of fear and desperation. If you want to make people afraid around you... be afraid and they will follow. It is much more difficult to give strength to those who are afraid, but much more rewarding. If somehow someone, anyone, sees me and says to himself or herself, “I see now there is nothing to fear,” all I have been through will be worth it!

As of April 2006, I’m still here and my quality of life is good…all things considering. We just celebrated my youngest daughter’s 8th birthday. My wife and I still have “date nights” where we occasionally crack open a bottle of wine, cook a special meal together and eat by candlelight. I read some, take naps as needed and listen to the needs of my body. I am taking approximately 17 pills per day ranging from blood pressure medicine, potassium tablets, cortisol reducing pills, and different meds for sleep aid, heart burn/indigestion, and nausea.

This is a different lifestyle for me, just having to take so many medications (a first in my life). I have had times drinking coffee or something in the morning where my body rejects the intake of any liquid or food. I am prepared for anything coming my way, and am usually not caught off guard when it happens. I usually wake up very early each morning, approximately 4:00 A.M.; sometimes groggy, sometimes with more energy. I wake up each day wondering how I will feel. If I have a good day, I am thankful, but I also know a day of feeling poorly will soon follow. It is kind of a game of win a battle / lose a battle my body is playing with me. I have no expectations for the way I feel each day and I think this is healthy for my mental well-being. I generally have at least one good meal per day, even if it is spread out throughout the day. Sometimes the medicines make me feel bad for a few hours after I’ve taken them.

Presently, I can feel the tumor extending below my rib cage, which is odd, but in some weird way reassuring as to what is going on. It is actually comforting for me to know that I am not crazy and something really is there. Now that I actually can feel the tumor, when I begin to wonder what is going on I can touch it and ground myself. I know one-day things will get worse physically, or at least I think they will, but I am not worried or afraid of what will happen. I am thankful for each day I am here and look forward to each day as it comes.

This cancer (ACC) will take my life, but am hoping research will continue in order that others won’t have to lose a parent, friend, child, spouse or loved one so early in life (the average age for this cancer is 40). I have a great hope (earnest expectations) of my spirit to enter heaven when I leave this Earth. For that reason, God has blessed me to be in a place of appreciation for this life, but has gotten me ready for what is to come. I have great peace with the decisions I have made. I do not wish to try medications that would affect my quality of life while I am here and then die anyway, loosing what could have been. I am asked from many people why I have decided to do “nothing”. Many say they would (if in my shoes) do anything to save their own life. I am respectful of their opinions, but they aren’t in my shoes. My answer to them is this: there is certainly a fight at hand when someone is dying with any terminal disease. I also realize there are different kinds of fighting. Some will fight by putting on all the armor they can, going into battle, becoming maimed and dying anyway, their body destroyed. I, on the other hand also fight. My fight is different than the fight of others. I fight for quality of life and dignity in death.
As I sit and write this chapter in my life I realize my time in this life is not yet over. I have quality of time with my family and am blessed by the continued support and prayers of family, friends and concerned people who are aware of my situation. I hope in some way when my time on this Earth is complete my shared experiences will be an inspiration to others, and someday stories like this won’t have to be shared at all.