Friday, December 31, 2010
On this New Year's Eve, we find ourselves full of gratitude and breathing a sigh of relief (if I can be honest) that we're closing the book on 2010.
It has been a sweet end to the year for our family. Christmas was great... we celebrated with everyone together, sharing food, laughter, and watching the little ones tear open their presents. My dad was emotional during our time together, but in that "laughter-through-tears" kind of way.
I remember thinking last year at Christmas (right after my dad had received his diagnosis) that we all seemed to enjoy the holidays more, knowing that the future was a little more uncertain. This year was no exception. It's been a long, arduous battle, and these last few months have been the toughest of all, physically, for Dad. We all were (and are) grateful that God keeps giving us special memories together as a family unit. At this point, we'll take any excuse (Thanksgiving, Christmas, a Thursday night) to get together and just hang out!
A lot has happened over the last few weeks as Dad settles into his new routine since returning from the Mayo Clinic. He's on many new medications. Before surgery, his extremely low blood pressure was a major concern. Post-op, it's been the exact opposite problem. Most of his new meds are for uncontrollably high blood pressure. Unfortunately, with all the new drugs, he is fatigued and somewhat "foggy". Even as recently as yesterday, his medications were altered once again to continue battling that blood pressure and try to relieve some of those side effects.
He continues dialysis 3 times each week and leaves there feeling exhausted (they say it's like working an 8 hour day). Perhaps soon his body will begin to adjust to this rigorous routine... we have some good friends in this field of medicine who have encouraged us that it will - we would appreciate your prayers for this to happen!
Three other days each week, a physical therapist comes out to the house to help Dad regain some of the muscle tone he has lost over the past few months. The PT is a really nice guy, which is a blessing. On their short walks around the kitchen counter, I have overheard him asking my dad questions about the grandkids... smart motivator, isn't he?
Next week, Dad has an appointment to discuss a surgical procedure to insert a permanent access into his arm for dialysis (it's called a fistula). From what we've all been told, it's very important for him to receive dialysis through this fistula instead of his current arrangement (I have no idea how it's administered currently, only that it has a much higher risk of infection and is not optimal).
In other news, this was also a hard year on my parents' plumbing system. It revolted this week, leaving toilets, tubs, showers, floors, and sinks flooded with well... you get the picture. My dad is usually credited as the "funny" one, but my mom had us in tears of laughter as she stood there, sleeves rolled up with a plunger in one hand and a gallon of Clorox in the other, and deadpanned something about it being a fitting end to 2010.
(By the way, I might have just been fired from ever updating this blog again!)
Let me recover by saying this...
We could not have made it through the past year without the grace of Jesus and your outpouring of love. I marveled as I sat on my parents' couch this week and poured through the various cards and emails you've sent them this year. Long letters, Bible verses, words of encouragement, personal visits - we are ALL gaining strength and courage from your friendship.
I think my mom is going to have a hard time putting away the Christmas decor. This year, every ornament and tinsel and wreath and bow was hung by many hands of many friends who "surprised" her with a decorated house when they returned from Minnesota. It's a great picture of what everyone has done for us this year.
You have traveled a long, long road with my mom & dad this year, and as he's asked you to do in the past, I'll ask you again... please keep up the great work!
Happy New Year 2011!
Friday, December 17, 2010
I can definitely make things interesting. We returned home from Minnesota last Wednesday. Friday, I developed severe lower quadrant pain and we called EMS. I was admitted to the local hospital until Sunday. I had really hoped to stay out of hospitals a little longer.
It appears after many tests and examinations that nothing had “broken down” and the pain was a “normal” part of the recovery from my abdominal surgery in Minnesota.
Speaking of Minnesota, boy, did we get out right in time. It is much better watching a blizzard on the weather channel from the comfort of my recliner than the window of a hotel. I can barely handle the cold weather we have had in Clearwater. The low 30s are bad. Below zero is ridiculous!
These have been difficult days for Patra and me as we try to adjust to a new normal – dialysis three times per week. We again solicit your prayers and ask that you “not grow weary in well doing.” Please keep praying for us! Numerous times THIS WEEK God has demonstrated His love to us through your prayers, cards, visits, e-mails, etc. God showed His love to us through His visitation to earth – I’m so glad He didn’t forget us. We appreciate the fact the you haven't forgotten us.
I am hooked up to a dialysis machine for 4 hours/3 days a week so much of our time is spent preparing for, traveling to, and receiving dialysis. It is a much more difficult adjustment than I thought it would be. I am exhausted at the end of dialysis.
Over the next several days we have a number of important visits with doctors. These are my first meetings with them since my return from Mayo. I am really interested in their input into this RARE AND RADICAL WORLD.
The grandkids continue to be great therapy – no matter how difficult a day may be, their antics and stories bring smiles.
Christmas really is about the best GIFT that was ever given. God sent His Son - the greatest gift that was ever given. Wise men brought GIFTS. What gift can I bring this year?
I’ve asked Jenny to send a Christmas card to everyone through the blog next week and to include pictures.
Until next Friday. God willing.
Friday, December 10, 2010
(updated collaboratively by Jenny & Emily)
They are home! Mom and Dad are home!
After 31 days in Minnesota, Mom & Dad arrived home safely on Wednesday evening. Adam & Jenny's families were excited to meet them at the airport with hugs and helping hands. But the real welcome started about an hour after the flight landed.
As we pulled our cars into Mom & Dad's neighborhood, we were all greeted by dozens of neighbors and friends holding signs, shouting greetings, and cheering them on as they traveled the last few hundred feet toward HOME!
On our parents' insistence, the crowd of well-wishers gathered inside for a few moments and sang two songs at dad's request. Snippets of the evening's events were caught on video... the quality of the pictures isn't great, but the quality of the hearts of these amazing people - well, it leaves us speechless.
After such an amazing welcome home, we enjoyed a quiet dinner together and then left Mom & Dad to get settled in for their first night back in their own house. We knew they needed sleep as Thursday was going to be a busy day - Dad's first day of dialysis here.
Apparently, it was a rough day, but we are confident that over time it will get a bit easier and they'll find the best "fit" for Dad's needs. That is something they would love your prayers for, as his next appointment for dialysis will be Saturday.
The challenges of the day were overshadowed by the arrival Thursday evening of Emily & Austin. They couldn't come home Wednesday evening because Austin had a preschool Christmas performance Thursday morning at school. He gladly obliged his Grandma and Grandpa with a full performance of all his songs when he got to town, though!
After two nights of sweet serenades from friends, neighbors, and grandchildren, Dad needed a little break from giving this week's update himself. We hope he'll be back to the blog soon. After all, we know how transparently his heart shows when he can write these things himself. And we can only imagine that he has a lot he wants to share.
For now, just know that the overwhelming emotion from the kids (and grandkids) this week is a great big old sigh of relief and a sense that things are just a little more "right" in the world because Mom & Dad are HOME!
Friday, December 3, 2010
We are very homesick. I can't wait to get home to "sunny and warm" Clearwater! The talk today during my dialysis was about a possible "BLIZZARD" tomorrow. Are you kidding me? a BLIZZARD! I haven't been outside in weeks but am still freezing. People in Minnesota think hurricanes and alligators are scary - and they may have a BLIZZARD!
Our week wasn't dull - I'm getting good at keeping things exciting. We were released from the hospital last Thursday. Saturday morning I had a significant amount of bleeding. We went to the hospital to get checked out and they told me I "had bought myself a new admission and a colonoscopy." People no longer respect promises - I had my regular colonoscopy in August 2009 and was "promised" I wouldn't need another for 3 years!
Seriously, colonoscopies are nothing - everyone seems to agree the preparation is the worst part. This time the preparation caused some nausea and vomiting so Sunday was not a fun day. Monday morning I was taken down for the procedure and by Monday night we knew the bleeding was not a major problem. One of the concerns was that the bleeding might be caused by the amyloidosis attacking my digestive system. It was quite a relief mentally to know the doctors do not think that has happened. I added 4 more days to my hospitalization total and was released on Tuesday afternoon.
Please continue to lift us up in prayer. God has been so faithful and I don't like admitting when I have a "faith crisis." I totally lost my focus one night early this week and convinced myself in the middle of the night that I would never make it home to Clearwater to see my kids or grandkids again. I'm sure it was precipitated by a discussion with the doctors upon my re-admission to the hospital as to whether or not I wanted them to use "heroic measures" to resuscitate me if I "coded" during any procedure. When you lose your focus and your faith falters, you begin to imagine things - I convinced myself the doctors knew something about my condition they didn't want to tell me and that's why we had that discussion.
Now that I am again an "outpatient," I go to the Mayo Clinic every day for appointments with doctors, physical therapy or dialysis. Wednesday I had physical therapy - I did not do well. I'm having a difficult time with balance.Candidly, I'm not performing well with the strength or walking either. I've got some real helpers in Clearwater who have come out in the past to encourage and walk with me in the mall. They helped me recover from the bone marrow transplant. I'm looking forward to seeing them and having them help me again. Right, friends?
I have physical therapy this morning (Friday) and depending upon when we travel HOME I will have one or two more physical therapy sessions here.
My next dialysis is Saturday and a Mayo social worker is coordinating with a dialysis center in Clearwater to make sure I am set up for dialysis when we GET HOME.
Patra may take away my role praying for our meals. Lately, I can't get passed praying for the kids and grandkids without getting emotional. She can't get passed me being emotional. Meanwhile, the food is getting cold!
When we met with the nephrologist yesterday, he discussed my staying in Rochester another week to allow a vascular surgeon to install a "fistula"in my arm which I will use for dialysis. I told the doctor I didn't think I could handle any more "procedures" right now. I am down to 150 pounds and frankly need a little break from the probing and cutting. An additional procedure would mean an additional delay in getting HOME. I told him I was "homesick" and that I was confident I could find a qualified vascular surgeon in Clearwater.
Also today (Friday) I am scheduled for "autonomic reflex testing." Monday we meet with the doctor to discuss the findings. I'll be honest with you - I have no idea what it is about or why I am taking it. Once the doctors told me it wasn't "invasive" I was satisfied that everything else would work out. Monday's meeting with the doctor may be an important one. Please pray specifically that the doctors will say we can GO HOME!
Father, you are so faithful. Help me not to lose my focus - to keep my eyes on You! If it is Your will, I pray that we can go home soon and continue my recovery there.
We love you and appreciate you more than you will ever know. God Bless!
Until next Friday - and hopefully from WARM, SUNNY Clearwater where the only place they talk about BLIZZARDS is at the Dairy Queen! God willing.
Friday, November 26, 2010
Happy Thanksgiving from MinneSNOWta!
We were released from the hospital yesterday. I will return as an outpatient for dialysis and physical and occupational therapy. While this was not the plan of my treating doctors, the insurance company did not approve the intensive physical therapy program that my doctors recommended.
The doctors (who had to be extremely frustrated) kept the focus on my care and were willing to adapt to the situation day by day. They assured me that they would deal with what they were presented with. With their support and the assurance of scripture that "all things work together for good to those who love the Lord, who are called, according to His purpose," I am confident that the "new plan" will work well in getting me strong for the trip home in about a week. It is interesting that some really bright, wonderfully trained physicians and surgeons, at one of our most prestigious medical facilities, would have their considered opinion as to my medical treatment nullified by an insurance company account representative who has never seen me, examined me or probably spent any time in medical school.
On Monday, November 15, I had my surgery. I can't remember exactly what it was called, but the procedure involved a bilateral laparoscopic ligation of the kidneys, hand-assisted. Both of my kidneys were "shut down" and now I will be on dialysis for the rest of my life (unless medical science makes some really significant advances.) The important point to me right now in my recovery is that little phrase - "hand-assisted." The surgeon told me before the surgery that because of significant fluid retention, he would probably need to make an incision for hand assistance. After the surgery, when we looked at my belly, there were the typical "holes" where the laparoscope would have been inserted. But what shocked me was the size of the incision for the "hand-assisted" portion of the surgery. Every time the doctor came to see me in follow up, I looked at his hands - he has big man hands! Patra says it looks like I had a C-section.
It is taking longer than I expected to recover. These have been some of the darkest days of the journey so far. You wonder if you will ever feel "normal" again. Pain medication dilutes the discomfort/pain but it is always a balance where too much "assistance" leaves you "foggy". We never expected to be here this long - 18 days so far. I was in the hospital 12 days. It is cold - this was the coldest Thanksgiving in Rochester in 25 years. We miss the kids and grandkids more than we could have imagined. They were great about calling Patra several times on Thanksgiving to get her opinions about cooking the Turkey meal.That helped to make her feel a part of the festivities!
Patra and I had our Thanksgiving meal in my hospital room. As we prayed for our meal, we were both overcome with emotion thinking about the family so far away. Please understand that it has not been all tears. We are so thankful for the blessings God has poured out on us. We honestly believe that we now have an opportunity for a longer and productive life.
Several times I have just cried out to God - calling His name and asking Him to comfort me, to cover me with His presence - yes, to take away the pain and discomfort.
I have layed in bed listening to my I-pod and God has used the musicians and their words to bring comfort and peace to me. Listen to these words from Mandisa - it's as if they were written just for me!
Mandisa "He is with You"
He is with you
When you're in the ICU
and the doctors don't know what to do
and it scares you to the core
He is with you!
Patra has been there every step of the way, sleeping on a cot in my hospital room so that she could help me through the night. As one of my nurses told me - "I hope you are getting her a great Christmas present."
The Mayo Clinic is quite a place. It employs more than 30,000 people. I have met and been treated by some wonderfully dedicated, talented people. I want to do more reading about the Mayo brothers (Will and Charles) and the work that has been and is being done here.
I have a tube coming out of my stomach for draining fluid. It looks like a hand grenade but is actually a "Jackson-Pratt" drainage bulb. As my nurse was changing and draining and cleaning my "Jackson-Pratt" she mentioned that she had gone to Mayo High School with the daughter of either Dr. Jackson or Dr. Pratt. History comes alive!
As you pray for us this week, the schedule is to undergo dialysis Friday, then Monday, Wednesday and Friday next week. The dialysis takes about 4 - 4 1/2 hours and I am very fatigued when we are finished.
I will meet with the outpatient physical therapist Friday and set a schedule for therapy next week.
Next Wednesday one of the surgeons from the transplant team will assess me and make a decision as to whether it is OK to undergo a procedure to remove the "Jackson-Pratt" drainage bulb. They would like to have that removed before we go home.
Until next Friday. God willing.
Friday, November 19, 2010
At the end of last week's post, my dad left off with the knowledge that he would be having surgery (but didn't know when) and the details of what would be done during his operation. Here's the latest since last Friday:
On Saturday, Dad passed out twice - once in the hotel room and again in the infusion center at the hospital. He was admitted to the hospital immediately so that the doctors and nurses had all the time they could get to increase his strength in preparation for the surgery.
On Monday, he had surgery to shut down his failing kidneys. This was done by clamping off the kidneys... the actual organs themselves were not removed. As a huge praise(!), Dad's vital signs were good throughout the procedure - thank you for your prayers for him!! He spent longer than expected in the recovery room because of extreme pain. It's been hard in the days following surgery to manage his pain levels and keep him somewhat comfortable.
The day after surgery, he was able to walk with assistance, which also means he was able to stand up without passing out!
On Wednesday, he began his first round (?) of dialysis. He is scheduled to receive dialysis every other day while at Mayo. When he returns home, I understand that he'll be going for dialysis 3 times/week. Many people have asked if he'll be able to do his dialysis treatments at home, but from what my mom explained, the type of surgery he had means that he is not a candidate for those "at-home" machines.
Wednesday afternoon, my parents learned that he would be in Minnesota a bit longer than originally anticipated. They need to keep him there until he can pass certain milestones in walking, eating, etc.
Thursday was a rough day pain-wise. After a conversation with the doctors, my parents were informed that after being discharged from the hospital (which may be Monday?), my dad will be transferred to a rehab facility for a bit. Because he's been feeling so bad post-surgery, he is not eating well (if at all) and hasn't been able to practice walking.
So, it looks like they'll be up North for a little while longer. And I think my parents are content with that plan! Mom has been spending the night at the hospital with him, and she told me today that the staff is very good about limiting those middle-of-the-night interruptions.
And Dad's allowed, on his new dialysis diet, to have lots of protein and mashed potatoes. The makings of a great Thanksgiving dinner, if you ask me!
Speaking of giving thanks, we are so very grateful for you and your continued prayers. You are an encouragement and a gift to our entire family. We are hopeful that the next few days will bring about some news of gained strength and diminished pain. We are looking forward to sharing again soon!
Friday, November 12, 2010
I am actually writing this blog note on Thursday night. It has been quite a week and a very long day.
Sunday's flight went well and we know that was because so many people were praying for us. Fortunately I made it through security. A supervisor had to be consulted and I was afraid we would need to get permission from Washington to let me through. My answers and devices were not made for the new screening procedures. Not only do I have a port, but it is accessed which means I have a large needle sticking into my chest. (Silly me, I had never even thought about using my needle as a weapon!) The young man who did my "pat down" was very nice but I told him that he was not allowed to pull on any cords he felt anywhere on my body.
Once I got in my seat I didn't move - thanks in part to wonderful medications! One of the "most mellow" flights I have ever taken. As we made our way to Minnesota, I thought of the people and Sunday school classes that were praying for me even as we were in the air. We could not have made it without Adam, and Patra and I are so grateful he came with us.
The weather in Minnesota this week has been unseasonably warm - near record highs almost everyday this week. It was the talk of the people we met, the TV news shows, the newspapers, etc. I wanted to say "you're welcome" to everyone who talked to us about the beautiful weather because again, I know there were a lot of people (besides ME) that have been praying for good weather. Unfortunately, I should have asked you to pray for the weather to stay warm a little longer because it looks like we will be here a while and today's temperatures were 15 degrees colder than yesterday. Snow flurries are in the forecast for this weekend.
The Mayo Clinic is a phenomenal place. Very large, very beautiful, with its own art work, museum of Mayo history, etc.
Our hotel is right across the street from the Mayo Clinic and through an underground walk way, you never have to go outside. The "subway level" has its own shopping areas, food courts, etc.
Monday morning I met with the hematologist/oncologist. He went through my medical records and asked many questions. He explained the physiology of what is happening with this "nasty little disease." Patra and I both feared he was going to tell us there is nothing that can be done, go home to Florida and try to stay comfortable.
But instead he told us that my present situation was intolerable, my quality of life was poor and I shouldn't continue to live like this. He saw two options, one of which he would not recommend and he did not think it would work. (Didn't sound like such a good option.) The other option he said is "rare and radical." (I could hardly wait to hear that option.)
I will try to explain what they are going to try and accomplish. I don't have all the answers yet, things are changing rapidly. The doctor suggested I have surgery to "oblate" my kidneys. That means they will "shut down" my kidneys. (I can't have a kidney transplant because we can't get the disease in remission and it would do the same thing to any new kidneys.) Because of the disease, my kidneys are "throwing off" all my protein. That is causing most of my physical problems. If the kidneys are not functioning, then theoretically I won't lose protein. I will need to have dialysis for the rest of my life, but hopefully I will have a longer life and most importantly, my quality of life should improve significantly.
He referred me for testing and a consultation with a Mayo nephrologist (kidney doctor.)
Monday night in the hotel room I passed out. It was a bad one. Tuesday morning I was very sick. Mayo got me into the infusion center for treatment. It confirmed for Patra and me the need to proceed with even a "rare and radical" option. Tuesday afternoon we met with the nephrologist. We were somewhat surprised because he didn't share the same opinions as the hematologist/oncologist. He recognized the need for shutting down the kidneys but his approach was more conservative than the "rare and radical" but also "irreversible" plan. He said he wanted to talk personally with the first doctor and to his surgical team.
Today we met first with the hematologist. My test results had come back and my numbers are most impressive (and not a good impressive.) He referred to my tests results as "profound," "dramatic," "dangerous." We agreed that I really had no other options than to try the surgical route, and there was no reason for delay. Then it was back to the nephrologist. Apparently, his review of my test results and consultations with my doctor and the surgeons convinced him of the need to take the "rare and radical" approach.
He began making phone calls to set up the surgery. At one point it looked like I might have the surgery Friday. As the day ended, I learned that I will have a consultation with the surgeon Friday and also meet with the nutritionist to talk about my new diet on dialysis. And that really is about all I know as I write. From talking to the doctors today, it looks like we may be here a couple of more weeks. We want to be home for the Turkey Trot! That nutritionist better not have anything bad to say about Thanksgiving dinner!
We have so much to be thankful for. We now have hope of a better quality of life and a longer life.
As we left the doctor's office, we had to proceed quickly to the infusion center for treatment. In the main lobby of the Mayo building, a small ensemble was singing before a rather large crowd of patients and family who were watching and singing along. Patra had to manage the wheelchair through the crowd. They were singing "How Great Thou Art." When we got to the other side of the crowd, the singing finished and there was much applause. Patra and I both had tears in our eyes.
We went into the building where the infusion center is located and someone in that lobby was playing "I'd rather have Jesus than anything" on the grand piano. The tears were now starting to flow again. How good is God that we would leave two very serious discussions and immediately have musicians share two of my favorite songs as we passed through - what incredible timing by God.
We arrived just in time at the infusion center, checked in, and sat in the waiting area. Patra's phone rang. Adam called to tell us that he and Sharon are having a boy! Patra and I both started to cry. She couldn't even talk on the phone for several minutes. I'm sure the other patients wondered what was wrong with us. Wrong - no - it's just that God's presence is so overwhelming at times.
I'm pleased to report that they also have warm blankets in Minnesota. When the nurse put my blanket on today, I couldn't help but think how I am blanketed with the incredible love of God.
Sorry I have gone on so long. We love you all and appreciate you so much. Again, we solicit your prayers - they mean so much.
May God bless you!
"Father, thank you for being so real to us. Thank you for wonderful doctors in Florida and Minnesota who have cared for us. Thank you for giving us hope for a better quality of life and for the possibility of a longer life. If it is your will, I would love to meet the new baby Bugg. May he grow up to be a man of faith. As I go to sleep tonight, I want to sing "How Great Thou Art." I would rather have Jesus than anything this world can offer."
Until next Friday. God willing.
Friday, November 5, 2010
It is November! Thanksgiving may be my favorite holiday. I love the Thanksgiving meal that Patra prepares for lunch and then later that night, we have "squished" turkey sandwiches with worchestershire sauce. Can you tell I'm ready? It may be different this year because I am having a significant problem with my appetite -I have no appetite. That is really weird for me. I think I want something and when it touches my mouth, it turns to metal and that is the end of eating. The doctors have given me an "appetite enhancer" (hormone) but so far not a lot of success.
What makes the situation more interesting is that I am also retaining fluid so my weight is increasing rapidly. Wednesday I weighed 190 - it seems like only days ago, I wrote that I was down to 167. They have started me back on a diuretic to get rid of some of the fluid.
I've decided to be thankful all of November. Every day I try to think of some way God has blessed me over the years and then spend that day thanking Him for the specific way He has worked.
We really do solicit your prayers this next week as Patra, Adam and I travel to Minnesota for my consultation at the Mayo Clinic. We had a real answer to prayer this week and a confirmation that we are on the right path in going to Minnesota. When we got the appointment, I learned that the Mayo Clinic was "out of network" as far as my insurance plan was concerned. This meant that we would be personally responsible for all of the costs and expenses associated with my medical care and tests. My case manager at Moffitt worked with us as we tried everything we could think of to get coverage. Nothing worked. On Tuesday (November 2) of this week, I decided I would make my last pitch and I confess, I worked myself into quite a frenzied state as I prepared to make my case. A nice young man ("Jack") eventually answered (after I spent 20 minutes pushing every conceivable number on my phone to get a human being) and asked if he could help me. I started in.
After a short while, Jack interrupted me. "Mr. Bugg, I think you will be pleased to know that as of November 1, the Mayo Clinic is a network provider for your insurance plan." "Pleased?" Are you kidding me? I wanted to kiss Jack. I'm glad my conversation with him was recorded "for quality control purposes." I told Jack to immediately go and give himself a raise. While we were prepared to do "whatever it takes" to get this consultation, this certainly was good news. While we had made efforts to move up the appointment at Mayo when it initially seemed "far off," this important insurance issue was resolved 1 week before my appointment.
Sunday night was "Trunk or Treat" at Jenny and David's church. I had planned for weeks to attend. I went in the wheelchair and really enjoyed seeing my grandkids and also visiting with friends from many years ago. Jenny and David had a "booth/car trunk" handing out candy. Jenny's theme was from the movie "Up." She and Andrew and Megan dressed in character.
Dear God, thank you for everything you do and have done for me over the years. Give me an attitude of gratitude this entire month. Thank you for friends and family who are standing by me and who are praying for me. I pray that you would bless their lives. Father, give us a safe trip to Minnesota. Be with the doctors that I will see. May their knowledge and years of experience enable them to devise a plan of attack to counter this "nasty little disease." May your will be done. Give me strength to do whatever it is you want me to do - I pray that even now, I would be able to serve you, that somehow I might be a blessing to someone else. More than anything, I thank you for Jesus.
Until next Friday! God willing.
Friday, October 29, 2010
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."
"Why, no weigh?"
"You are way too pale."
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.
Friday, October 22, 2010
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.
Thursday, October 14, 2010
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!
Friday, October 8, 2010
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!:
Friday, October 1, 2010
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.
Friday, September 24, 2010
But this week, you're getting Plan "B", also known as Jenny.
Which is kind of appropriate, because our family seems to be perfecting the art of Plan "B" lately.
On any given evening at my parents' house, you might overhear several phone conversations between me, my mom, and my brother as we set out a strategy to conquer the next day's itinerary. My dad's work schedule, the babies' naptime schedules, law school, law practice, t-ball practice, chemo - they all get factored in and each member of the family gets their assignment.
And undoubtedly, with the dawn of the new morning, we are already on Plan "B" because someone is sick or a class got cancelled or a game got moved, or the home health care nurse is coming at noon. While Plan "B" usually gets us through the day, we are known to line up an arsenal of back-up plans for our back-up plans.
We are like the boy scouts - always prepared...
But this past week sure has tested our skills.
For instance, take Saturday.
Plan A was for Mom (Patra) & Dad (Bob) to come watch my son's first t-ball game of the season with our family and my brother's family, then head out to a quick lunch afterward. Dad did great at the baseball game. We had a seat for him under some shade, close to the restrooms, not a far walk from the parking lot. He made it to, through, and out of the ballpark just fine. We went to a great little lunch place near the ball field, and Dad ordered a nice big lunch. Before our dishes were served, he asked Adam to help him to the restroom.
Plan B was that Adam adeptly caught my Dad as he passed out in the men's room, kicked the door open wide enough to make eye contact with someone in the dining area, and shouted in his best former-police-officer-stern voice for, "SHARON!" This command sent my sister-in-law running for the bathrooms, followed by my husband and my mom. I stayed behind with the 3 bewildered children.
A few tense moments later, Dad regained consciousness and, obviously not prepared for the change of plans, asked my brother, "Why am I on the floor?" Adam is getting pretty good at catching Dad - I think this is the 3rd time he's been in the right place at the right time. We are often grateful for God's providence (and Adam's tall, strong stature) in these moments.
Lunch took on a different tone after that. Dad tried to make us all feel a little better by staying conscious and eating some of his meal. We all pretended to eat ours, while taking turns staring directly at him to make sure he remained upright. We quickly finished and got him in the car and home for fluids.
Saturday turned out to be a pretty good indicator of the week to come.
On Monday, Plan A was to start Week 4 of his chemo treatments.
Instead, the hospital staff took a look at his pallor and test results and called for Plan B - NO CHEMO. He just wasn't strong enough this week to handle the course of treatment, so it's been pushed back another week to allow his body to recover a bit. Monday's back-up plan included all-day fluids and albumin.
Tuesday's plan was for Dad to feel much better after a day at Moffitt and be able to work in the late afternoon.
Instead, we cancelled his mediation and he spent the entire day at Moffitt for a blood transfusion and more fluids.
On Wednesday, Dad was once again scheduled to mediate a case in the afternoon. As I walked into his house to pick him up for work (he wasn't up for driving), I had very little faith in Plan A. (I think my dad was a little concerned about getting through the day, too). Remarkably, he managed to summon up the energy to do what he does best... it was a great few hours at the office!
On a typical Friday, Mom & Dad get to spend the morning watching Adam's little girl.
But Plan B has already been set in motion, as Dad will be scheduled to get more all-day fluids and albumin at Moffitt today.
It has been a tough week physically for him, but as always, your prayers, comments and words encourage our WHOLE FAMILY as we walk this particular path.
You know, I think we can get carried away planning and replanning for all of life's possibilities. Some of it's necessary, of course. But I find more and more comfort from the simple (and powerful) verse found in Romans Chapter 8 (v. 28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose.").
He has a MASTER PLAN. And it's a whole lot better than Plan "A", "B", or any other course we can come up with. And He is working it out for my Dad's good... for my Mom's good... for the good of everyone who loves Him.
And just because He likes to give us glimpses into His goodness, He provides those extra little blessings along the way. Like the fact that, because my parents are away all day, I get to have both baby girls this morning to myself.
Sometimes... Plan "B" comes with beautiful blessings!
Friday, September 17, 2010
More good news! We really do praise God for all of the blessings He gives to us as a family. Right after we “went to press” last Friday, Emily was advised she passed her comprehensive exams for her Ph.D. She will be working with her advisers over the next several weeks getting her dissertation topic approved. Then begins the process of writing her dissertation. It was exciting to me to hear her talk about the areas of interest that she will be addressing in her dissertation. She has spent the last four years getting to this point and she is thrilled. Her goal is to teach at the college level – teaching and training teachers. She will be terrific. We are proud of her!
Emily and Austin came home and we celebrated Adam and Sharon’s pregnancy and Emily’s success. A good friend drove over from Ormond Beach Friday night for a quick visit. Andrew (5) and Austin (4) were in a party mood and associated Chobee’s visit with the party. “Uncle Chobee” became the main man and when he left, they wanted to know “if the party was over?”
I wasn’t feeling good physically because of finishing another cycle of chemo-therapy last week but I enjoyed the weekend. There was lots of laughter and celebrating. The house was noisy, active, alive.
Saturday morning he and I got up early and went to breakfast. (Patra gave explicit instructions on how to care for me if I passed out or needed emergent care.) I custom ordered breakfast. Unfortunately, I was at that stage where food still smells good but once it hits my mouth, it has absolutely no taste or appeal. So after a couple of bites, that was it. But we were still able to talk.
Faith, family, friends. As I thought about his visit and our time together, several thoughts came to my mind about our "friendship."
We share a “history.” Chobee and I have been friends for basically 50 years. We went to junior high school, high school, college and law school together. That has resulted in a lot of memories and stories. Our "history" is rich.
We share a “faith.” We were in the same youth group during junior high school and high school. We talked about how we had been encouraged to memorize scripture while we were in the youth group and how even today, those scriptures still come to mind. I told him that during the hospitalization for my bone marrow transplant, there were many days I was unable to read. Some days I didn't even want to open my eyes. During those times, I would lay in the bed and scripture and hymns would come to my mind and bring comfort and peace to me. I did not know when I was first learning those verses how they would be used, but I am thankful that God prepared the way many years ago.
We talk about “everything.” Although much of our conversation was about my “nasty little disease” we talked about many other things. We just shared our lives. With good friends, there are no topics that are “off limits.” Chobee asked some really penetrating questions. I told him that during the night I had thought several times about questions he had asked me earlier. At one point during breakfast, Chobee asked me how I was really doing. I told him I am really doing fine. I quickly followed up by saying that I know I am doing fine only because of God's grace. I make no guarantees as to how I may do tomorrow or the next day. It is certainly my prayer that God will be glorified every day of my life and that He will continue to be gracious in that regard but I do not know what tomorrow will bring. I fully expect that there will be even more difficult days ahead and while I may not be OK temporarily, it is most important not to get stuck in the "tall weeds." I also told him that if those difficult times come, I will let him know and he will need to make another "road trip" to Clearwater! That's what friends are for.
September 13 is an "anniversary" for Patra and me. This year, it was the 42nd anniversary of our first date. I'm getting really good at making these special days "special." When I woke up Monday morning, I couldn’t stand up. Every time I tried, I would get very dizzy and have to immediately sit down. (This is not a good way to be. There are many activities which require standing.) Patra used a walker to get me in the car and we headed to Moffitt. I was very dehydrated (orthostatic hypotension) and required a lot of fluid and potassium. They took x-rays and ran a number of tests to rule out other problems. I was prescribed additional medications (I'm getting quite a collection) and home health care will be doing additional blood work. Once again, my "anniversary" meal was a hospital tuna sandwich and chips. But at least we spent it together!
At one point a nurse came into my room and asked which arm I wanted her to use to draw blood. I was so pleased that my port would mean no need for another "stick." “You won't need an arm. I have a port and it’s accessed.” “I know you have a port and I will use it to draw blood but this particular blood culture requires we also take blood from your arm.” Who wrote that rule? Is somebody changing the rules on me?
My daily I.V. fluids have been increased. I am now "hooked up" to the I.V. pole about 6 hours a day. I am thankful that it is on wheels and I am thankful that it's height can be adjusted to get through doors in the house. I'm becoming quite proficient at negotiating the house while "connected." I have suggested to Patra that she go to Home Depot and see if they can custom make me fittings so that I can hook my port up directly to the garden hose. That might save a lot of time.
By the way, if you are driving down Belcher Road and notice a gray Honda with an I.V. pole sticking out the sun roof, please honk and say hello!
Wednesday I wanted to get out of the house (and out of the recliner) without going to a hospital. We decided to get a quick bite to eat. The restaurant staff was so glad to see us. It had been months since we had been there. As we walked in the door, everyone yelled out, “Welcome to Moe’s.”
Andrew (our 5 year old grandson) is scheduled for brain surgery at All Children’s Hospital on Monday, October 11. (There is a neurosurgeon in St. Petersburg who is really being prayed for by a mediator in Clearwater!) My appointment at the Mayo Clinic is scheduled for November 8. While we tried to get an earlier consultation for me in Minnesota, once again it appears that God has graciously worked out the timing. Patra and I want to be here for Andrew's surgery, hospitalization and initial recovery. It seems like that will work out. Our prayer is that by the time we go to Minnesota Andrew will be well on the road to a full and complete recovery. Your prayers for Andrew and our entire family have meant so much. Thank you.
Father, we praise You for all of the blessings you have given to us. You are good... all the time. Father, in the midst of this journey, I pray that I will never miss the blessings. Thank you for Emily's good news - may she be used by You in a special way to minister to others. Thank you for friends who have supported us, loved us, cared for us, prayed for us. Help me to be that kind of friend. Father, I do pray for Andrew and for his surgeon. May the surgery be successful and may his recovery be quick and complete.
Until next Friday. God willing.
Friday, September 10, 2010
We have definitely walked through some “tall weeds” the last couple of weeks. Yesterday (Thursday) was spent at Moffitt. I was very weak and dizzy, nearly passed out as we entered the building. Patra got me in a wheelchair and up to the Infusion Center where the nurses looked at me and immediately put me in a bed and began work getting me "juiced up" again. (This is another opportunity to say how grateful we are for the kind, compassionate, attentive, responsive care that we have been given at Moffitt.) Lab work showed my potassium was very low and as is usually the case, the chemo-therapy has lowered many of my numbers. Next week is "rest week" so hopefully we can get a little bounce back before we start cycle #4.
The other night God impressed upon me some great assurance and comfort. The “tall weeds” will never be so tall that I will lose sight of God. Even in the midst of the “tallest weeds” all I have to do is LOOK UP and He is there. The “tall weeds” will never be so thick that He will not provide a way of escape. He is my refuge and my strength. Whenever I am in the “tall weeds” He is right there with me. He will never leave me or forsake me.
We are overwhelmed by your support and prayers. Several people have commented that they “don’t know what to say” because the news has not been good. That’s OK. You are doing great. The expressions of concern and love and support mean so much. We not only hear your words, but we always hear your hearts! We regret having to share difficult news with you. Therefore, it is wonderful today to be able to share some good news.
No, make that great news! Patra and I are going to be grandparents again. Number 5 is coming. Adam and Sharon are having another baby. He/she is due in early April. About 30 minutes after Adam and Sharon told this wonderful news a couple weeks ago, (we were sworn to secrecy until they made their official announcement yesterday) I passed out and was taken to the E.R. At the hospital I told Adam that he and Sharon were going to have to be a little more careful giving me exciting news. Congratulations also to Jon and Marilyn, Sharon’s parents – if my math is correct, this will make 7 grandchildren for them. To the right is a picture of our newest grandchild (or an alien) taken yesterday, Thursday. So young, so little, so fearfully and wonderfully made! Baby Bugg, you are already loved!
It appears that Andrew will have his surgery to repair the Chiari malformation during the first couple of weeks of October. Thank you so much for your prayers - I will keep you advised as we know more.
I will be able to get an appointment with one of the world’s leading experts on amyloidosis at the Mayo Clinic in Minnesota. The first available date for the consultation is in early November although we are trying to get in sooner. (I’m not sure but I think it gets cold in Minnesota by November. This Miami-born boy would like to be in and out of Minnesota before any of that white precipitation starts to fall.) Apparently, in discussing my case with my doctor, the doctor at Mayo described my situation as “challenging.” I’m not sure that’s a lot better than “rare” but at least it is different.
I have established a new “habit.” And I love it. For several weeks now, I get up between 5:45 and 6:15, go into the living room and read my Bible. NO TELEVISION. NO RADIO. NO COMPUTER. NO DISTRACTIONS! It is dark outside and very quiet. I typically read 4-5 chapters in the Old Testament. I am currently reading Deuteronomy. I write down words or concepts that are contained within the reading and then try to think of questions I would want to ask if I were teaching that section of scripture. One of the phrases I wrote down several days ago was “a soothing aroma to the Lord.” (In discussing the sacrifices that the Israelites were to make at the Tabernacle, that phrase is often used. We are told that when the Israelites properly sacrificed in obedience to God's instructions, their sacrifices were a "soothing aroma to the Lord.")
I then read a chapter in Proverbs. Today, September 10, I read Chapter 10. Since Proverbs has 31 chapters, I am able to read all of Proverbs every month.
Then it is on to the New Testament. I started with Matthew and I am now reading Luke. As I have read through the gospels, I have spent a lot of time thinking about Jesus. That makes it all worthwhile! What an incredible Savior! I do not see how anyone could read the gospel writers and not be impressed by the life and teachings and ministry of Jesus. It makes me realize that we (believers) have not done a good job of communicating Christ. Objections to Jesus are most often objections to the hypocrisy or inconsistency of His followers – me.
Next, I read two short devotionals books to get me thinking about applying scripture to life situations.
Finally, I spend time in prayer.
It is usually shortly after 7:00 a.m. when I finish and Patra is cooking breakfast. The other day she started the coffee brewing and I began to smile. What a “soothing aroma.” Our "morning joe" became a great practical illustration of the truth of God's Word. I understood better how God is pleased by the “soothing aroma” of the sacrifices.
“Father, I praise you for Who You are. I want to bring to you my “sacrifice of praise” hoping that it will be a “soothing aroma” to you. We praise you for the new baby that will join our family. We praise you for Andrew and the fact that we know he is in Your hands. Even today, may my life be a living sacrifice, wholly acceptable to You, a “soothing aroma.” With respect to those I speak with and interact with, may the words of my mouth and the meditations of my heart be acceptable in Thy sight, may they be a “soothing aroma.” Help me be better about communicating Christ to my world. Don't let me do anything that would reflect poorly on Your Son.
Until next Friday. God willing.
Friday, September 3, 2010
Judith Viorst wrote a children’s book titled “Alexander and the Terrible, Horrible, No Good, Very Bad Day.” Unfortunately, we’ve had that kind of week.
Jenny - A couple of months ago Andrew was diagnosed with a “Chiari Malformation” in his brain. His brain extends past the base of his skull and creates a sort of “cork”, plugging up the entrance to his spinal column. Thursday’s tests showed that this malformation is virtually blocking all spinal fluid from entering and exiting his brain. In addition to the fluid blockage, this “tonsil” of brain that’s extending downward is throbbing against his spinal column with every single heartbeat. The MRI images also showed that some spinal fluid (but only a very small amount so far) has accumulated in his spinal cord.
The surgeon was most concerned about the throbbing of his brain into the spinal cord. It’s very rare (he mentioned that this was the 2nd time he’d seen this effect with a Chiari patient) and exposes his brain to undue jostling and potential for
The good news is that this can all be corrected with surgery. The procedure was clearly explained and the doctor reassured us that it’s a much less invasive procedure when done on children (adults require a much more aggressive surgery with a longer healing time). And from all accounts we’ve heard, it’s a remarkably effective “fix”, virtually eliminating most patients’ symptoms.
Although we have not yet scheduled his brain surgery, we have been advised to get it taken care of within the next several weeks – early November at the latest. This will include a 3 day hospital stay and a recovery period of about 5-6 weeks.
We’re sad for our little guy that he has to go through this at all, but we’re grateful for the peace that comes from knowing God is in control and loves Andrew even more than we do. We are ready to get this taken care of soon – and get him back to his busy schedule of Kindergarten and t-ball!
Like every parent and grandparent, Patra and I would gladly volunteer to go through the procedure for him if we could. He is too young to understand and was very frightened by the MRI. Please pray for Andrew, Jenny and David. Please also pray for Andrew’s other grandparents, Tom and Margie, David’s parents. Andrew loves them so much and they have walked through “tall weeds” for many years. Tom has a serious health issue. Their faith has been an example and encouragement to Patra and me this year. (This gives me an opportunity to say that we are blessed by each of our grandchildren having terrific grandparents “on the other side.” I plan to write more about that in the future but suffice it to say that I know that all of my grandchildren have other grandparents who love them unconditionally and will always be there for them. Tom, Margie, Ken, Joyce, Jon, Marilyn – may God bless you and protect you. Thank you for being the grandparents you are! Knowing you
are there for “our” grandchildren gives me a wonderful peace.)
Bob’s Bad News Day. I am no longer “playing the game.” Before we go to the doctor for a status report, Patra and I posit a “best” and “worst” case scenario. Since my diagnosis of amyloidosis, I do not recall a visit where the news didn’t come back “worse” than my “worst case” scenario. That was true again this week. My
“worst case” scenario was that the test results would not be good but the doctor would tell us it was too early in the treatment (we just began cycle 3) to make any assessment.
I was partially correct. My most recent test results were not good. This is one “nasty little disease.” While there is still a “possibility” the chemo-therapy will work, the bottom line is that my doctor does not believe the treatment is going to work.
Since we have exhausted the recognized treatments for amyloidosis (bone marrow transplant and chemo-therapy using Velcade) she recommended we consult at either the Mayo Clinic (Rochester, Minn) or Dana-Farber Cancer Institute (Boston, Mass.) In her view, those two hospitals have some of the best doctors and programs dealing specifically with amyloidosis and may be able to offer clinical trials or experimental type treatments not available anywhere else.
My doctor is attempting to get me an appointment which may be difficult (their expertise causes these doctors to be in great demand) so we are praying that all the necessary details and logistics can be worked out. She does not want me to wait many months for an appointment.
We really do solicit your prayers. Please know that Patra and I are fine. I am so proud of Jenny and David – they are being squeezed and their faith is flowing out. It is amazing how God has shown us His love and care during the past couple of days.
A part of me wants to pray, “God, enough is enough, I am tired of this, please heal me, heal me completely and heal me now. But God, more than anything I have ever prayed for, I am begging you to take care of Andrew.”
God is good… all the time, He loves me and He loves Andrew and He cares for us. He is sovereign and omnipotent. His thoughts and ways are so far beyond my own thoughts and ways. God has never let me down. Therefore my prayer will be:
“Father, we are in Your hands and there is no other place we would rather be. May Your will be done and not my will. Help my unbelief. I want to trust You in all things at all times. … and by the way, Andrew is a really special kid.”
I just read this post for the final time hoping I would catch any typos, etc. What jumped out to me was not the grammar but the fact that we will have to work to get an appointment to have human doctors meet with us. Yet, the God of the universe, the Creator and Sustainer of all life is always right there for me to talk to. He is never too busy and always interested in my case. I always feel better after consulting with the Great Physician. By the way, He knows more about Chiari malformations and amyloidosis than anyone!
Until next Friday. God willing.
Friday, August 27, 2010
I’m not sure I can handle another “rest week.” The roller coaster ride continues. Sometimes you are slowly climbing up with a pretty good view of everything around you. Things seem under control and manageable. But you know that a drop may be just over the horizon or just around the turn. I'm not a big fan of roller coasters and on the rare occasion when I have ridden one, I hold on tight and try to focus on what's ahead. It's been that type of week with this "nasty little disease." I'm holding on tight and trying to stay focused.
Sunday afternoon I passed out again. Thankfully Adam was at the house and when I felt I was “losing it,” he "carried" me to the bedroom. He and Patra quickly drove me to Moffitt. I wondered if my "driver" would be my professionally trained son (law enforcement defensive driving courses) or "Danica Patra." Adam deferred to Mom - probably a wise decision. (My eyes were closed because of my condition. I wonder if his eyes were closed during the drive.)
Tests confirmed I was dehydrated and my potassium level was very low. We “closed down” the B.M.T. (Bone Marrow Transplant) Clinic Sunday night about 7:30 p.m.
Monday morning I was still dehydrated so it was back to Moffitt for more fluids, proteins and potassium. It was decided that I should have a PICC line (Peripherally Inserted Central Catheter.) The good news is that I no longer have to be stuck with a needle to have I.V. line(s) placed every time I go for blood work, fluids, chemo-therapy, etc. I think my veins join with me in giving thanks for the PICC line.
To keep me hydrated, home health care was brought in and I am receiving I.V. fluids daily. They trained Patra so she is not only my primary care-giver but also my nurse. She gives me I.V. fluids and flushes my PICC line daily. It is amazing how “user friendly” they have made these medical aids and she is doing great keeping me “tuned up.” (She does not have to give me any injections. Thank you, Lord!) A home health nurse or Moffitt nurse will clean and change the dressing on the PICC line. Andrew is pretty excited that Grandpa has his own I.V. pole at the house.
I won’t have my PICC line for long. Next Thursday, I am scheduled for a procedure to insert a port.
As I received my I.V.s Monday and waited for the PICC line to be inserted, I was anxious. Since the end of 2009, Patra and I have made many trips to Moffitt. There are moments in this journey when you can't help but get tired and discouraged. I recently read a biography of Oswald Chambers ("My Utmost for His Highest") and he would often tell the troops he served while in Egypt during the difficult days of World War I “I refuse to worry.” Repeating and thinking about Chambers' saying and Psalms 56:3 "What time I am afraid, I will trust in Thee" brought me a great deal of comfort and peace. (I am no Oswald Chambers so the words of my prayer were more like "God, I am trying to refuse to worry, but it is really hard. Would you please help me?")
The certified PICC nurse specialist did a wonderful job. Using ultrasound visualization, she located a large vein in my upper arm and inserted a plastic tubing catheter which runs up my arm, across my chest and into the superior vena cava near my heart. A chest x-ray confirmed the correct placement of the PICC line.
Looking at my vein on the ultrasound and realizing that a wire and catheter would thread their way through my vein and stop at a point near my heart, I was thankful for an incredibly wonderful Creator and Designer. Right now, my body is nothing to brag about. My weight is down to 167.5 (that’s high school thin and close to 40 pounds below my "normal" weight.) But I am fearfully and wonderfully made.
I was designed by a loving God. Because of God's design, doctors are able to use their training and knowledge to accomplish procedures like installing a PICC line. They can rely on the design of the Great Physician. Laying in the hospital bed I contemplated the amazing way God designed us. Last year I read a book, written by a physician in England, which speaks of the wonder of the human body. When I arrived home, I read again the following portion of the book dealing with the human heart. I thank God for His amazing, incredible, wondrous work of creation.
The heart is an astonishingly powerful pump, capable of propelling the entire volume of the body’s five litres of blood through the ‘pipeline’ of arteries and veins that, stretched end to end, would circle the globe five times – 100,000 miles in all. This ‘pump’ may be no bigger than an orange, nestling in the palm of the hand and weighing just a quarter of a pound, but it generates enough force to propel a fountain of blood against gravity six feet into the air, and in doing so utilizes as much energy as the legs of a marathon runner pounding the pavement…. And for good measure, this masterpiece of engineering efficiency should with luck run the two and a half billion cycles of a lifetime without maintenance or lubrication, or the need to replace its four sets of valves, which open and close four thousand times every hour. James Le Fanu, Why Us? How Science Rediscovered the Mystery of Ourselves, p. 121.Have you thought lately about how special you are? You are fearfully and wonderfully made!
Patra and I would appreciate your prayers for our grandson, Andrew (5) and David and Jenny. Andrew is scheduled to have additional MRIs done at All Children's Hospital on Thursday. When I look at him, it is easy to see that he is wonderfully made. What a God we serve!
Until next Friday. God willing.
Friday, August 20, 2010
This is always a busy and exciting time of year and even this “nasty little disease” can’t change that. Andrew (5) started kindergarten on Wednesday. When his first day was done, he told his mother that he really liked his school and therefore there was no reason for him to go to college. We are keeping Austin (4) for a couple of days while Emily is in Texas taking comprehensive exams (written and oral) for her Ph.D. Adam starts his second year of law school Monday. (He is doing much better than I did. I have mixed feelings about that. He is doing MUCH better than I did!) Adam’s wife, Sharon starts teaching next week so Patra will sometimes watch Avery until Adam picks her up after class.
All the talk in our family about school made me realize how much I miss teaching. Normally, I would be getting ready for a new year of teaching Community Bible Study and a new semester teaching negotiation and mediation at the law school. And, just so I didn’t get bored, I would be teaching my adult Bible study class at church. While my plate was probably a little too full, in less than a year, all of those opportunities to teach have disappeared. While I am physically unable to teach presently, God has graciously opened another door of ministry through this blog.
This was a good week. I completed the chemo-therapy portion of cycle #2 and next week is a “rest week.” With every treatment the last two weeks, I have been given fluids and proteins and that has definitely helped me stay hydrated. I am really going to try and avoid any emergency runs to Moffitt or an E.R. We will be doing some testing next week which may give information to the doctors about whether or not the treatment is working. Your prayers would be appreciated.
I am regularly reminded how many people are experiencing “storms” in their lives. For some of us, it is an illness or a disease. For others, it is financial or relational or legal. In the Gospel of Matthew, we are told about an incident where the disciples experienced a “storm.” (Matthew 14:22-36)
I would like to share three thoughts about this story. (It is a rich story and there are certainly many more thoughts and truths to be gleaned from it.)
Sometimes when you are in a storm, God wants you to get out of the boat and do something exceptional. I believe that God still wants to use me. He is going to get me out of the boat of this “nasty little disease” and He is going to let me “walk on water.” I believe that God is going to enable me to do something that I can’t even define at this moment that will be beyond what I believe I will be able to do. I'm praying that I will again be able to teach a Bible study class.
For me to get out of the boat and walk on water, I’m going to need to trust Him. At some point, when He tells me to “come” or to “go” or to “do,” I’m going to have to get out of the boat and obey. As long as I keep my eyes on Jesus, I’ll be OK, but when I take my eyes off Him, I’ll sink. Again this week, I was reminded how this is a daily journey. The other night I woke up and began to think about the future and my mind wandered where it shouldn’t go. (Sometimes my mind wants to go even deeper in the tall weeds than the disease has taken me.) I was sinking. Fortunately, I was able to regain my focus, spent some time praying and thinking about God’s promises to me. His mercies were new in those early morning hours. It is my prayer that I will be faithful to His call when it comes.
God answers prayers, even short ones. When he was sinking, Peter prayed, “Lord, save me!” I am becoming a master of the short prayer. “God, give me strength for today.” “Father, thank you.” “God, I am afraid.” “You are so faithful.” “Please help me.” “Protect my family.” He hears them all.
Until next Friday. God willing.