Friday, June 25, 2010

"A Great Father's Day"

(Friday, June 25, 2010)
I had a great Father’s Day. Jenny’s gift was a bag of potato chips which made me laugh. (I do wish I could find where Patra hid those chips. By the time I finished opening my other gifts, those chips had disappeared. If you are new to my blog, you may wish to go to the blog entry for March 31, "Boys Will Be Boys" or click POTATO CHIPS to appreciate Jenny's gift.) I also received photographs of the grandkids, some clothes and wonderful cards.

Andrew (5) gave me $1.07 but later asked me to check and make sure his “shiny quarter” didn’t somehow mistakenly get in the mix that went to Grandpa. He seemed pleased when I told him that I planned to spend his gift on chewing gum for both of us.

Walking the mall every night definitely paid off for me this Father's Day. Every night as we walked by the kiosk in the center of the mall, I would stop and watch demonstrations of remote controlled helicopters. Patra surprised me with my own small remote controlled helicopter. Now, I sit in my recliner and fly it around the living room. My goal is to get proficient enough to fly it out of the living room through the door into the kitchen and back out to me. Megan and Avery (8 months) love to watch it hover above the coffee table. Andrew (5) is already a pretty good pilot and when Austin (4) comes, I’m sure he will be able to take it apart and repair any damage from the crashes. (Yes, there have been a few dramatic moments but thankfully no injuries.) I have had more fun with my helicopter!

On Monday morning I made my first solo shopping trip to a store since my transplant. I had to get batteries for my helicopter! On Sunday, we “borrowed” batteries from every remote in the house. It’s not good when you have to make a choice between being able to fly your helicopter or watch TV. Now, if a hurricane comes, we can take the batteries out of the helicopter and listen to the radio for emergency instructions.

Patra and I are going to the Mayo Clinic (Jacksonville) for a consultation next week. I am so pleased with all of the care I receive at Moffitt but there is concern about what the future holds in light of the fact that the recent tests did not show that the bone marrow transplant has yet “worked.” We look forward to having another pair of eyes review my case. Once again, your prayers for a safe trip and good information would be appreciated.

This will be our first “road trip” since my diagnosis. Immediately after my transplant I did not want to be more than a few minutes from Moffitt and my doctors. I am improving in that I am willing to venture this far from home, although we will break the trip up by stopping for one night in Gainesville, spending time with Emily, James and Austin. (There is no truth to the rumor that I intentionally made Gainesville part of our itinerary because it is home to Shands Teaching Hospital. But that is comforting to know, isn’t it?)

A part of me is excited about taking an “out of town trip” but the reality is that I still need an afternoon nap and I will be asleep no later than 9:00 p.m. I was never much of a “party animal” but even my life has slowed down considerably.

The Mayo web site states that there are only 3,000 diagnosed cases of amyloidosis a year in the United States. With a population of 300,000,000 Americans, that means my odds of getting this “nasty little disease” were 1 in 100,000. I went on the internet and learned I had better odds of marrying a supermodel. (Patra reminded me that I did!*) Statistically then, out of 20,000,000 Floridians, about 200 of us will be diagnosed this year with amyloidosis. I can’t tell you how special I feel!

Patra will need to prepare food for our trip because a “low sodium” diet is definitely not compatible with eating out at restaurants. One meal at a fast food restaurant exhausts my daily sodium allowance. I will try to be good but I am probably going to cheat a little (after I see the doctor) on the trip home. I can already hear a whopper calling my name.

Until next Friday. God willing.

Bob
* Special thanks to Floyd

Friday, June 18, 2010

"HOPE - Confident Expectation"

(Friday, June 18, 2010)
It has been a good week. I was able to mediate 3 cases this week and drove myself to the office twice. We went to Moffitt yesterday. I lost 5 lbs in the last 2 weeks so the diuretic seems to be working. We were looking for slow and steady loss of fluids without dehydration so that is going well. Now if we can just get some good numbers in a couple of months on the kidney front. Please keep praying for those good numbers!

My hair is growing back! I am going to need a haircut soon. Unfortunately, hair growth also means I have to shave again. It was pretty nice having a few months off from having to shave.

I am also encouraged by the fact that I have more energy and a desire to spend time studying. Several weeks ago I wasn’t sure I would ever be able to teach again because I didn’t have the energy to prepare a lesson. In the last couple of weeks, I have enjoyed doing some topical studies. I thought I’d share some edited thoughts from a study I have been working on. It is significant to me for a number of reasons. I have a number of friends (including some new friends) who are walking a similar journey. They have taught me a great deal about how we should walk. As Christians, we are able to make it through this journey because of the HOPE we have. Your journey may not be a life-threatening illness. You may be walking through a financial crisis or a relational crisis, difficulties in a marriage or difficulties with a child. No matter what kind of “tall weeds” you may be walking through, you need HOPE.

If a person doesn’t have HOPE, they are in trouble. This is easily demonstrated by merely thinking of the opposite of hope – hopeless.

“HOPE - Confident Expectation”

The Bible uses some really important words. Faith, love, atonement, repentance, sin, salvation, trust, belief. The list goes on. Often we hear these words or use these words without really understanding what they mean or appreciating all they mean. In my journey with this “nasty little disease,” these words have very real and important implications.

HOPE. Please understand that I have not “arrived.” We are not at the end of our journey – we don’t know where we will end up or how long it will take to get there. It appears that more difficult days may be in front of us. Some days are better than others. I don’t have all the answers and I know I don’t. But at the end of every day, when the lights are out, the house is quiet and Patra and I are alone, we often comment about how well we are doing. Even “under the circumstances” we are doing well. We know that would not be possible were it not for HOPE. HOPE is a very important word to us.
Biblical HOPE is different. We use the word hope often in everyday conversation. “I hope the Rays win tonight.” “I hope it doesn’t rain during our family picnic.” “I hope I get good presents on Father’s Day.” (The foregoing commercial was for the benefit of my three wonderful children!)

As we make this specific journey, I often think in “hopeful” terms. “I hope I keep getting stronger.” “I hope the tests come back better in September.” “I hope my fluid levels stay balanced.” “I hope I will be able to work this week.” Using hope in that way, it is really nothing more than wishful thinking, a possibility. I have no idea whether those “hopes” will come true. They are not solid or firm; there is nothing about my “hopes” that I can hang my hat on.
In the New Testament, the Greek word for HOPE, elpis, is different. It doesn’t refer to wishful thinking. This word for HOPE refers to something that is firm, solid, grounded, real, assured. It refers to something we can bank on. The word elpis means “confident expectation.”
Biblical HOPE is not dependent on me, it is grounded in God.
The refrain of the hymn “My HOPE is Built” states clearly, “On Christ the solid rock I stand, all other ground is sinking sand, all other ground is sinking sand.” My “confident expectation” rests in the character and promises of God. Where do you place your hope?
A few years ago, I had high hopes in the stock market. The charts we prepared showed that if I continued to work hard (and long enough), I should be able to retire comfortably. Sinking sand? Within the past year, I expressed the hope that I would continue to mediate a high number of cases for at least another 5 years. I had a lot of hope in myself and my physical ability to be able to do that. Sinking sand? Wishful thinking? Yes.

But my HOPE , my “confident expectation,” is in God. He has never failed me (or anyone else). He will keep all of His promises. He is able to deliver. He is all powerful, all knowing. He is love.
I have probably gone too long in this “short” summary, but I want to leave you with one great verse on HOPE.
“Now may the God of HOPE fill you with all joy and peace in believing, that you may abound in HOPE by the power of the Holy Spirit.” (Romans 15:13 NASB)
Until next Friday. God willing.
Bob

Friday, June 11, 2010

"You look good."

(Friday, June 11, 2010) “You look good.”
Next Thursday (July 17) I return to Moffitt to check on the edema (swelling). Unfortunately there doesn't appear to be any improvement in that regard. Every time I look in the mirror, it reminds me of film clips from the end of World War II when American troops liberated the concentration camps. I look like a “holocaust survivor.” The muscles in my shoulders and upper body have atrophied and my upper body is “skin and bone.” My belly is distended (swelling). I would say that my body shape is like a pear but that would insult the fruit industry. Patra’s cure is “stop looking in the mirror.”

With my grandchildren so young, I often think about how they will remember their grandfather. I fear sometimes they will only remember me as being “sick.” So it was a very special moment this week when Andrew (5 years old) ran over to me as he was leaving the house and unprompted by any adult said, “Grandpa, when you get well, you have to take Austin (his cousin) and me to McCabe’s for breakfast.” He remembers our Saturday morning trips to breakfast. I can assure you, when I am physically able, he and I are going out for breakfast! (I’ll even teach him about a low sodium diet.)

Since we walk most days at the mall, I am definitely a “mallrat.” One night this week while we were walking, we passed a young men’s clothing store and I told Patra, “that’s what I need.” In the window on a mannequin was a “muscle shirt” – a sleeveless workout shirt. My wonderfully supportive wife immediately said “you look scary enough.” She knew that would make me laugh.

Later that same evening, as we were finishing our walk, we saw a young man we have known many years. He grew up in our neighborhood and was a good friend of our son. In addition to playing all sports, whenever a neighbor would discard furniture, appliances or Christmas trees, they would drag them home to repair, rebuild or construct a fort. He is now married, has his own business and a beautiful 2 year old son. When he saw us walking, he came over. “Mr. Bugg, you look great.” (Remember this is the “holocaust survivor” whose loving wife said he looked “scary” only 20 minutes earlier.) I wanted to thank him but I was preoccupied gulping down my bottled water. Since we were near the end of our walk, my focus necessarily had to be on breathing and standing up right. But Josh continued. “You look really good; you look like you’re getting stronger. Keep up the good work.” What an encourager! He was stretching credulity but it sure made me feel good. He made me feel like I could run a lap around the mall and I would have except for the fact that I needed to quickly get to the car and collapse.

But everyone who prophesies speaks to men for their strengthening, encouragement and comfort. 1 Corinthians 14:3 NIV

Patra and I have been blessed by many encouragers who have strengthened and comforted us. Thank you!

I wanted to give a quick update to those who regularly read the blog. I have learned that one of the important requirements for an “ambassador” is to be a good listener. Recently at work, someone walked into my private office and shut the door. They proceeded to share their story of a difficult personal journey. My mind immediately went to my recent blog entry and my desire to be an ambassador for Christ to this person in need. I was thinking of what I might say to help. After several minutes of sharing, he thanked me and opened the door and walked out. I had said almost nothing. No words of advice, no magic bullet to solve the problem, no recommendations. Yet I felt like I had been an encourager and a comfort. I was a good ambassador … just by listening!

Until next Friday. God willing.
Bob

Friday, June 4, 2010

"Did it work?"

(Friday, June 4, 2010) “Did it work?”

After a lot of discussion during our follow-up visit yesterday, Patra asked the doctor the ultimate question. “Did the transplant work?”

Drum roll. Pregnant pause. Anticipation builds. Are you sitting down?

Answer. “We don’t know yet.”

There you go. That’s the bottom line. I will try to give a little background to let you know how they arrived at that answer. Doctors are very scientific and use big words (I’m glad lawyers don’t do that), but I will try to explain what’s going on in language I understand.

My “nasty little disease" (aka amyloidosis) attached itself to my kidneys. It damaged both of my kidneys and caused them to “throw off protein” into my urine. In addition, this disease causes me to retain fluid.

The latest tests show improvement in many areas of the blood work. This is good.

My protein levels, however, are still very low; and most significantly, my kidneys are still “throwing off protein.” A lot of protein! This is not good.

My doctor explained again (I have heard this since my initial diagnosis and I am now totally and completely convinced it is true) that amyloidosis is a “difficult” (some might even say “nasty”) disease for the patient to endure and for the doctor to treat. It is not unusual for amyloidosis patients to have a “delayed response” to a bone marrow transplant. So, there is still the possibility that my transplant worked. It might just take more time for the disease to respond, and for the test results to demonstrate that it worked.

However, my doctor is “concerned” because in most patients there is at least some improvement in the numbers three months after a transplant. Unfortunately, my test results do not show any improvement – my numbers are high. I have decided that I do not like it when my doctors tell me my case is “interesting” or when they tell me that they are “concerned.” When they use those terms, I get very “interested” and “concerned.”

I will repeat the tests in three months and hopefully at that time, there will be at least some improvement. If there is no improvement, there is a drug which has shown some effectiveness with amyloidosis patients, and I may be started on that drug.

When I weighed in yesterday, I had gained another 5 pounds since my last visit (less than 2 weeks ago). I didn’t tell the doctor, but this most recent weight gain may not be all fluid retention. We had a Memorial Day picnic Monday with kids, grandkids, and good friends. Patra had a wonderful spread of food. I couldn’t resist and I may have “cheated” a little on my diet, but what a great Memorial Day!

Seriously, because of the fluid retention, I will start a diuretic tomorrow. These medications create a delicate balancing act with me. When I was on a diuretic before my transplant, I passed out and was taken by EMS to the hospital. At the hospital, I spent two days trying to get my fluid levels normal. Tomorrow, I will start off on a low dose of diuretic, and we will try to slowly take off some of this fluid.

What does this mean? It means that I’m going to ask you to continue to pray – for at least three more months. So take your time, go slowly, don’t rush or panic. But please pray that over the next three months my kidneys will kick into gear and stop throwing off protein. I also need the numbers to start showing some improvement. Pray that the lack of improvement in numbers so far is only a delayed response to the transplant. Thanks! I know you will because you have proven your faithfulness in prayer already.

I can’t end today’s blog without mentioning that I was able to make it to church and to my Bible study class last Sunday. Words really cannot express how much this visit meant to me. Our church family has been incredibly supportive of Patra and me during this journey; and it was great to be with them and to hear God’s Word taught and preached. I can’t wait to go back to church again soon.

Over the past several days, I have meditated on the following verse from Psalms.
Blessed be God, Who has not turned away my prayer, nor His lovingkindness from me. (Psalm 66:20 NASB)

Bob

These pictures will show you how much we all enjoyed our Memorial Day Picnic.

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Megan enjoying the pool

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Avery wearing her memorial day colors proudly

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Andrew flying high! (Thanks to his dad, David)
 

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