Friday, October 29, 2010

"Don't Stand Up"

Friday, October 29, 2010 "Don't Stand Up"
There is an old joke (notice I said old, not funny) where a man goes to the doctor. "Doctor, my arm hurts every time I move it." The doctor's advice: "Don't move it." I feel like that man. "Doctor, I pass out every time I stand up." "Don't stand up."

Early Monday morning we were on our way to Moffitt for treatment. I tried to walk from my front door to the car. As I got in the car, I passed out. When we arrived at Moffitt, I was immediately placed in a room, examined and treatment was started. Moffitt is now like a "second home" for Patra and I and we feel like we know most of our nurses and caregivers personally. I am well cared for and Monday was no exception. While these "syncopal episodes" are especially hard on Patra, she always feels relief once we get to Moffitt and they take over my care.

As a result, I am spending more time in a wheelchair when I am not in my recliner or in bed.

However, unlike the joke, there is a problem with simply not standing up - in just the short time that my orthostatic hypotension has been such a problem, my muscles have atrophied and I am getting weaker. Therefore, my doctors are working hard to get my blood pressure under control so that I can walk and get some exercise. The caveat is that I must be very careful not to fall and hit my head or otherwise seriously injure myself.

So it was an interesting day Wednesday at Moffitt. I received fluids and medication and then had an escort of nurses (together with Patra) as I walked down the hall. I think they were all more nervous than me. "Let us know if you feel faint. There is a wheelchair right behind you. If you need to, just sit down." I was proud that I was able to walk until they finally told me I had walked far enough and they would prefer that I sit down.

Unfortunately, Thursday was not as good so my "walking" was very limited. Once again, my "nasty little disease" is teaching me to live day by day.

There is a U.S. Postal Service commercial where the carrier is explaining to employees of an office that it is not necessary to weigh each package, as long as it "fits in the box, it ships." I felt like I was in the commercial the other day. The first thing that is usually done at Moffitt is to take my vital signs - I stand on the scales to be weighed and then my blood pressure and temperature are recorded. Because I am often "orthostatic" we sometimes have to forego the standing on the scale.

"Mr. Bugg, don't stand on the scale."
"No weigh?"
"No way."
"Why, no weigh?"
"You are way too pale."
"No way."

Over the next several weeks, God willing, and if I am able, I want to address some "hard topics" in my blog. I would ask that you pray that I would be able to address these topics clearly. It is one of my goals that this blog honestly address some of the issues that people walking through the "tall weeds" face. I pray that my thoughts might be an encouragement to others who are facing real challenges - not just illnesses - that life throws in our path. To give you an idea of some of the topics I would like to address.

Why hasn't God healed me?
How do you keep your mind properly focused when facing serious challenges?
What is heaven really like? Am I ready to go there?

A blog is really not a good format for addressing such issues. They are complex and require lengthy discussion. But I'd like to try and address them in a more devotional manner - probably the teacher in me that just won't be suppressed. So thanks for your prayers.

Some quick updates:
Andrew had his first post surgical checkup with the neurosurgeon yesterday (Thursday.) He is doing great and should be able to start back to school soon although he will be restricted from physical education activities. (The restriction is not going to make him happy.)

Avery is now officially 1 year old. As I've thought about it, she may benefit greatly from being born 6 days after Megan. We celebrated both of their birthdays together last week and it seems like she has had birthday celebrations every day this week. Good for her!

We are still on track for our visit in 10 days at the Mayo Clinic in Minnesota. I absolutely can't believe that they are having a blizzard. I watch the weather reports and have to add another blanket. I am cold already.

You continue to be the best friends and your support for our family means so much. May God bless each of you.

Until next Friday. God willing.
Bob

Friday, October 22, 2010

"37 Window is Having a Bad Week"

Friday, October 22, 2010 "37 Window is Having a Bad Week"
I am so appreciative that Jenny and Emily kept everyone up to date for the last couple of weeks. While in the hospital last week, I woke up from a nap one day during a shift change and heard some of the nursing aids outside my door discussing the status of patients. As I ordered my meals during the week, I would identify myself as being in the "window" bed in "Room 37." It therefore caught my attention when my aid told her replacement, "37 window is having a bad week." After numerous consultations and a great deal of medical jargon, she summarized my situation pretty succinctly. I was having a bad week!

For the last couple of weeks, there have been more bad days and fewer good moments. The major problem is "orthostatic hypotension" which means that my blood pressure drops to very low levels when I sit or stand up. As a result, I have "syncopal episodes" which means I faint or pass out. A week ago Sunday I passed out twice and the episodes were more severe than normal so Patra contacted Moffitt and was instructed to call 911. Basically for 5 days I was instructed to stay in bed (the alarm on my bed wouldn't even let me cheat a little) while the doctors conducted numerous tests and exams.

Again, we were treated so kindly by the medical and support staff and we are so appreciative and thankful.

The cardiologist started a new medication and I have three scheduled appointments per week at Moffitt for fluids and I.V.s as needed.

Because my physical condition has deteriorated, the doctors decided to stop my chemo-therapy until after I have my consultation at the Mayo Clinic in November. I would appreciate your prayers that the doctors will be able to "pump me up" so that I can physically make that trip.

We will be flying to Minnesota and Adam is coming with us. I call him my designated "catcher." His role is to keep me from hurting myself if I pass out.

Patra and I firmly believe that my hospitalization was a "divine appointment." We had many opportunities to share our faith and to talk about spiritual matters. Although the hospital was very busy and active during the week, one afternoon it seemed like "Somebody" threw a switch and things got very quiet. We had a wonderful Christian nurse with a young family that had been with us for a couple of days. We talked to our nurse about raising a family and the issues that young couples face. As Patra shared, I couldn't help but think how fortunate this nurse was to be getting advice from "the best." (Patra and I really are a team and my teammate is pulling a lot of the load during this time.) After a few minutes we prayed together.

Later that evening, as her shift ended, a young nursing student came to my room to say good night and told me she would pray for me. Then she said she knew that Patra and I were a couple of faith and she asked if I would pray for her. She shared some specific prayer requests and I assured her I would pray for her. I haven't missed a day since then praying for her. What a privilege and honor to pray for others.

I confess that I asked God if there might not have been a way to have these "divine appointments" without having to spend 5 days in a hospital bed. Seriously, I pray that God will use this time however He desires and that we will be faithful and obedient to His will.

I also have great news concerning Andrew. While I was in the hospital in North Pinellas, Andrew was at All Children's in South Pinellas having brain surgery. Patra was literally driving "back and forth" checking on Andrew and taking care of me. Fortunately, Emily spent the week here helping out and Adam missed some of his classes at the law school to babysit Dad so Mom could spend time with Andrew. Andrew went through the surgery well and was released from the hospital on Thursday. He continues to recover but for someone who had the surgery he had, he is doing remarkably well. What a great kid! He brightens my day!

And today, October 22, 2010, Megan turns 1! Happy Birthday, Megan. It is hard to believe a year has passed. I received word that she was born just as I was going to my first appointment with the nephrologist (kidney doctor.) We were early in the diagnostic phase which would eventually lead to the diagnosis of my "nasty little disease."

Avery (Adam and Sharon's daughter) was born 6 days later so these are going to be close cousins. Happy Birthday, Avery! We celebrated their birthday the other night and I've asked Jenny to include a short video of the girls eating cake. If you have a minute, please check out the personalities of my two granddaughters.



Since Emily was home, we were able to spend time with Austin (4 years old) as well. He and Andrew are best buddies and we all enjoy watching the two of them interact. Austin spent the night with Andrew one night and they had a great time "camping out." I am warning my children that these cousins have just enough "spice" to make sure their parents will have their hands full.

My brother Chuck flew down from Kentucky this week for a visit. He is my mentor in many ways. My children tease me about how my mannerisms are the same as his. Although far too short, we had a great visit.

So in the midst of the "tall weeds," God provides an oasis of His care and protection. Divine appointments, caring health workers, divine appointments, a wonderful family and wife. Who could ask for more?

"Father, thank you for taking care of me. Thank you for Patra, the kids and the grandkids! Thank you for the opportunities to share with others. Thank you for taking care of Andrew - may he get stronger and heal completely. I am so blessed."

Until next Friday. God willing.
Bob

Thursday, October 14, 2010

Gifts and Bows

Update from Emily:

Whenever I write a blog post, I hope to write something that makes sense… something that flows together… something that ends tightly. I want my writings to almost appear like a package – neatly wrapped with a beautiful bow that ties everything together.

As you have discovered with our family, however, nothing seems to be neatly wrapped these days. Our plan As quickly turn to plan Zs, and there are moments when nothing appears to be neat and tidy (especially dad’s disease).

Let this week stand as our example:

Dad’s fourth round of chemo treatments proved to be a bit hard on his body. By Sunday afternoon, Dad passed out every time he tried to sit or stand. When his “fainting” took on seizure-like qualities, we knew it was time to call 911. Dad’s ambulance ride turned into a five-day stay at our local hospital.

Mom, Adam, and I took shifts sitting with dad at the "grown up hospital" while Jenny and her family prepared for Andrew’s brain surgery at the children's hospital across town. Andrew went into surgery at 9:00 am on Tuesday morning. The procedure was a bit more invasive than they had hoped (the neurosurgeon needed to cut into some of Andrew’s soft tissue). The doctors told Jenny and David that Andrew had done well – the recovery just might be a little longer than expected.

Longer than expected? By 3:00 pm on Tuesday afternoon, Andrew was playing video games on his hospital room’s big screen TV. Wednesday was spent with visitors in his room, and by Thursday morning at 9:00 am, Andrew was released from All Children’s Hospital to finish his “long” recovery at home!

As we packed up his hospital room this morning, Andrew looked at Jenny.
“Mom can we stop on the way home and buy balloons?”
“Sure, buddy. Are we celebrating with a party at home?”
“Yes, mom.” Andrew replied. “And why don’t we also celebrate with a round of putt putt golf on the way home too!”

Thank you so much for all of your prayers for Andrew this week. I think that Jenny’s biggest challenge is going to be convincing Andrew to rest!

While Andrew was pushing for a round of golf, Dad continued to stay in his hospital bed on the other side of town. Cardiologists continued to try to stabilize his blood pressure in order to send him home. What dad doesn’t know is that I was trying to get him into the vacant room Andrew had just left at the children’s hospital! What a difference 55 years makes, Dad! While Andrew was enjoying a private room with video games, waterfront views, and a game cart that came around several times a day; Dad was living life with some rather interesting roommates and a view of the hospital roof. I still almost chuckle at the thought of a nurse coming by the room to see if dad and his roommate want to play a round of Candy Land.

Dad wouldn’t have it any other way, though – he would give the world to know that his children and grandchildren are well taken care of. In fact, I think the thought of Andrew’s great experience and recovery put dad in greater spirits. For tonight, just about an hour ago, Dad was released from the hospital to come home too!

Unfortunately, while Andrew was greeted with cookie cakes, balloons, candy, and suitcases full of gifts; Dad came home to a low sodium diet and a broken messed up TV remote control. (Sorry, dad. I have been living here for five days without you, and I know you hate it when I mess up your remotes!)

Dad will hopefully update you next week about his treatments, his meds, and his journey from here. For now, I am just so thankful to announce that everyone is home! That is the gift. That is the beautiful bow to wrap this blog post together, to tie everything with a bow. Everyone is HOME!

“Every good and perfect gift is from Above!” James 1:17

Friday, October 8, 2010

An Old Hymn, A New Perspective

(from Jenny)

My parents called a few days ago, asking if I would update my dad's blog on his behalf again.

Unfortunately, this means that he is feeling pretty terrible. At this point, he remains orthostatic (blood pressure drops so low when he stands up that he's always in danger of passing out) almost all the time, and it has been extremely difficult to find the balance between dehydration (treatment: more fluids) and major swelling (treatment: back off on the fluids).

Because his body is showing so much strain from the chemo treatments, his doctor ordered a slight reduction in the amount of Velcade he received yesterday (Thursday). We all hope that this gives him a little reprieve from all the nausea, dizziness, swelling and dehydration.

When they asked me to write this week's update, my parents' number one request was that I fill you in a bit on my son Andrew's upcoming surgery. It is now rescheduled for Tuesday, October 12th (just one day later than originally scheduled)around 9:00 a.m. We'll be in the finest care at All Children's Hospital in St. Pete. We expect that Andrew will have to stay 3-4 days in the hospital. After that, he'll be home from school about 2 weeks. He'll return to school (with limited activities) for 5-6 weeks, then he should be back to normal!

A few weeks ago, during our visit with the neurosurgeon, we were informed that parents often describe their child as having a light "turned on" post-operatively. For most, they weren't even aware that their little one was just a dim version of their full potential until they saw how the child became brighter after this malformation was fixed.

Upon hearing this information, I just stood in the hallway for a moment, collecting my thoughts...

"You mean, he'll be MORE active than..."

"I know," the doctor interrupted. "Sometimes, it is not really a good thing!!"

Those who have seen him in action will attest to the fact that Andrew is a very active boy. If his normal personality is on a dimmer switch right now, I think I need to start taking my vitamins!

Speaking of the dimmer switch...

I've had an old hymn stuck in my head all week. This is not unusual. I've inherited my dad's love for the old hymns, and I recall their words often.

When I was in 2nd grade, my children's choir had a contest where we were challenged to see how many songs we could memorize out of the hymnal (we had to know ALL the verses of each song for it to count).

There are days when I can't recall where my car is in the mall parking lot, but I can still sing you the 4th stanza of "Just As I Am".

Anyway... the song that has been in my head all week is called "Turn Your Eyes Upon Jesus". And the only part that keeps coming to my mind is the simple yet mighty chorus that says,

"Turn your eyes upon Jesus.
Look full in His wonderful face,
And the things of earth will grow strangely dim...
in the light of His glory and grace"

Focusing on the light of the hope of Jesus... that puts all these temporary troubles & worries into their proper light, too.

Thank you for your prayers on Tuesday (and those you've already been praying for all of us!). I look forward to telling the neurosurgeon that he has many, many people praying for his hands and my boy's head!

Here's a quick video link to the song, if you're interested or have it stuck in your head now, too!:


Jenny

Friday, October 1, 2010

"What a Comforter"

Friday, October 1, 2010 "What a Comforter"
Thanks to Jenny for helping me out last week. Jenny wrote about our family having to change plans frequently over the last many months. I feel like we have gone way beyond "Plan B." I think we have been through the alphabet (at least once) and are now on "Plan Z."

Unfortunately my computer bit the dust and is now in a repair shop. I am hoping to get it back soon.

Our prayer priority is our grandson Andrew's surgery which is scheduled for next Monday, October 11. We were able to move my appointments at Moffitt to the 12th so that Patra will be able to be with the family at All Children's Hospital for the surgery. We continue to solicit your prayers and are so thankful for the support you have shown us through this.

The last two weeks have not been good weeks physically. We spent many days at Moffitt getting fluids and other medications. This week has been better but I am still having difficulty with my blood pressure. I thought I was doing better on Monday but my "vital signs" disagreed. My blood pressure was rather "wacky" which raised some concerns. I was able to resume my chemo-therapy treatment so we are now in the midst of Cycle 4 of the Velcade regimen.

"Theater of the Absurd"
Sometimes you don't think straight when you don't feel good. (At least that's my excuse for most of my behavior.) One night last week I woke up in the middle of the night very nauseous. I looked around and couldn't find T.U.B. (Throw Up Bucket.) I looked all around the dark bedroom. T.U.B. was AWOL. At that point I had no choice but to wake Patra and tell her I was nauseous and needed T.U.B. quickly. She ran into the bathroom. I heard a lot of noise and then she brought me a substitute bucket.

At this point the story moves in an unexpected direction!

"I can't use that. It's dirty."
"It's not dirty. It's just make-up. I emptied my make-up into the sink." (the noise I had heard)

Here we are in the middle of the night engaged in a discussion with respect to the suitability of the receptacle I was being offered to use as a vessel for making a deposit. OK, I confess - I have some "quirks." I do not want my toothpaste squeezed in the middle and if a restaurant serves me a cup of coffee with lipstick on the cup, it will be months, if ever, before I return. And I want a clean "bucket."

By the way, T.U.B. is fine. With the busy and difficult week, T.U.B. had been placed back on "active duty" and inadvertently left in the car after a trip to Moffitt. I have forgiven T.U.B. for not being there when needed, provided it never happens again.

No matter how puny I may feel when I get to Moffitt I always feel better when they bring me a warm blanket. Most hospitals have blanket warmers and there is nothing better than the feeling of that warm blanket.

I am reminded of that same comfort through my faith. No matter how difficult the day or week may be, when I focus on the promises and provision of God, I get that same warm feeling. What a comforter!

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort." (2 Corinthians 1:3 NASB)

Until next Friday. God willing.
Bob
 

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