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.