Friday, July 30, 2010
In testimony before the Senate Banking Committee last week, Federal Reserve Chairman Ben Bernanke spoke of the future of the US economy in terms of “unusual uncertainty.” I understand that phrase. My “nasty little disease” has caused “unusual uncertainty.” Investors were upset by Chairman Bernanke’s admission that the future is uncertain. It made them “jittery” and as a result, the stock market fell immediately following Bernanke’s testimony. I understand that concern. I have been a little "jittery" myself and I think my own stock has fallen recently.
Uncertainty makes it hard to set goals, particularly long-term goals. I have decided against learning to play a musical instrument or learning to speak Spanish, although I am tempted whenever we walk by the Rosetta Stone booth in the mall.
I did however set an important goal this week. Lately, I have spent more time reading about the Bible than reading the Bible. It is easy to do because there are so many good Christian resources available to us. I have been reading excellent books, blogs and web sites. I have listened to wonderful podcasts. They have helped me understand the Bible and apply it to my life.
But as Hebrews 4:12 points out, it is the Word of God that is living and active, incredibly powerful. This week I was challenged and convicted as I read the testimony of a chemistry professor at one of our leading research universities who spoke of the importance of reading the Bible daily. I have decided to read through the Bible and, in just a few days, the time has been well spent. I read several chapters from the Old Testament and several chapters from the New Testament. I first read through the Bible in this manner while in law school. It has been many years since I've read the Bible cover to cover so I am excited about my new goal. (I realize this is not the best way for everyone to read the Bible – but for me, at this point in my journey, I firmly believe God will use it to His glory and my advantage.) Maybe next year, if my “unusual uncertainty” turns out well, I will read through the Bible in Spanish! Bueno!
Next week is my “rest week.” Yesterday (Thursday) was the last injection for the first “cycle” of the Velcade treatment. My initial reaction when the doctor described the treatment plan was that we not take time off to “rest.” My thought was we should keep injecting the drug until we get a positive response. After two weeks of treatment I now understand and accept the need for a rest period. Our bodies can only take so much of a good thing. I’m beginning to feel like a pin cushion. I miss the catheter (port) which was implanted for the bone marrow transplant. I wish we came into the world with a port – maybe we could trade an appendix or a spleen for a port. My veins will appreciate the week off. Looking at my arms would give someone “reasonable suspicion” to think I was abusing something.
I told my nurse that the treatments were having more of an effect upon me than I anticipated. She replied, “Yeah, it knocks you on your fanny, doesn’t it?” Yeah, that kind of sums it up. When you get knocked down, the important thing is to get back up. So I think I’ll use my rest week to get up off the floor, dust my fanny off, and see if I can’t keep my footing during the next “cycle.”
While I have a number of side effects from the treatment, the main problem is fatigue. It is more than just being “tired.” This is “hang my head,” “fall asleep in the chair,” “not enough energy to chew my food,” FATIGUE. I am also having “emotional moments” which is “weird” because I have never been an emotional person. These episodes usually occur when I read or hear about friends, particularly my young friends - the children and the infants - who are also walking through the “tall weeds.” When I think about them and the grace, strength and faith of their parents, it is hard not to be overcome with emotion.
I am confident some would say this is a good thing, that expressing my emotions is beneficial and “cleansing.” When I first told Patra that I was having these unexpected, short, intense bouts of emotion, she said, "now you know what every menopausal woman feels like." Patra knows how to make me laugh. But after thinking about it, I am withholding comment on that except to say that I do have more compassion for women now. The bottom line is that knowing me like I know me, it’s been “weird.”
I shared a couple of weeks ago that the doctor at the Mayo Clinic had given me an honest but certainly not optimistic prognosis. My heart was cheered this week when I read what Matt Chandler’s doctor told his wife in response to her question as to the best and worst-case scenarios. (Matt is the young pastor of a large church in Texas who suffered a seizure last Thanksgiving Day and subsequently had surgery for a malignant brain tumor.)
“The best-case scenario is that God heals you. . . The worst-case scenario, honestly, is that you get killed in a car wreck on your way home today.”
Now that is a wise doctor.
Patra and I are overwhelmed by your continued responses of love and concern. This journey has lasted long enough that we sometimes fear our friends must be getting tired of walking with us. But you have stuck with us and we are humbled and honored and blessed beyond measure by your support and prayers. Thank you!
Until next Friday. God willing.
Friday, July 23, 2010
(Friday, July 23, 2010) “Dealing with the Distractions”
Monday was a long, exhausting (mentally and physically) day at Moffitt as we began my new treatment. We arrived early for blood work and had several conferences before reporting to the Infusion Center in the afternoon for my first injection.
Although we knew the basic facts as we arrived at Moffitt Monday morning, it was still difficult to hear the doctor explain that my test results showed the bone marrow transplant had not slowed the disease. When Patra asked if there was a reason why my transplant didn’t work, we were told “no, but it is very RARE for a bone marrow transplant to fail.” I break out in hives when I hear a doctor say RARE.
My family doctor at the beginning of this journey: “Bob, you have nephrotic syndrome. It is very RARE. In 30 years, I have only had a few patients with nephrotic syndrome.”
My nephrologist (kidney doctor) upon receiving the kidney biopsy report: “You have amyloidosis which is a very RARE blood disease. I have never had a patient with amyloidosis.”
My oncologist upon receiving the bone marrow biopsy report: “you have the RAREST form of multiple myeloma.”
Mayo Clinic physician last month after reviewing my records: “your multiple myeloma is so RARE I have only had a couple of patients with this type of myeloma.”
Patra and I have learned that patients and caregivers are not always able to focus their energy on walking through the “tall weeds.” You have to deal with “distractions.” At a time when I needed to focus on my new treatment, we were confronted with an "insurance distraction.” The FDA (Food and Drug Administration) has not approved Velcade for treatment of amyloidosis, even though there are recent encouraging medical studies reporting success specifically in amyloidosis patients. Since the FDA has not given its "seal of approval" for my “nasty little disease,” Moffitt informed me that my insurance company had not agreed to pay for my treatment. We were advised that it might take 30 days for my case to be reviewed.
We are not talking about a $10.00 co-pay. Each Velcade treatment is VERY EXPENSIVE ($$$$). We are talking BIG BUCKS. A treatment “cycle” consists of two treatments a week for two weeks and then I will take a week off. According to the literature and the DVD I was given to review, I may require 8 or more treatment “cycles.”
As we did the math, the “distraction” became scary:
ONE VERY EXPENSIVE ($$$$) TREATMENT
X 2 TREATMENTS PER WEEK X 2 WEEKS X 8 (OR MORE CYCLES)
= BREAK THE BANK!
So we found ourselves in the business office signing papers agreeing that ultimately we would be personally financially responsible. (If I were a Wall Street bank, I would have applied for a bailout.) What choice do I have? My previous treatment failed. I have a life-threatening disease and the disease is winning. The only treatment option on the table right now is VERY EXPENSIVE and we can’t get insurance company approval. I would have signed anything. Actually I think I did sign anything. I believe I gave up my rights to my first-born – sorry Jenny!
Needless to say, when we finally got to the Infusion Center my mind was on the "distraction." I prayed that God would help me put the "distraction" behind me and focus on the task at hand which is to get this treatment and have it work!
Just before I was called in for my injection, our case worker found us in the waiting area and informed us that the insurance carrier had granted authorization for the treatment. What an answer to prayer! What a relief! (I wonder if it is too late to get Jenny back!)
As Patra and I talked about the day, we were grateful for a case manager that diligently pursued our claim and for those people at the insurance company that did the right thing and made a prompt decision. We also thought about the other patients and families who had been in the business office and all of our friends who are dealing with "life's distractions.” God certainly impressed upon us a sense of compassion for those who are hurting and having to deal with “distractions.”How are you dealing with “distractions” in your life? We live in a fallen world. Therefore, we all face temptations. We all face trials. We all face "distractions." I feel like we avoided a bullet this week. But I know that other "distractions" will come our way as the journey continues.
Thanks to our FAITH, FAMILY and FRIENDS, we will prevail over the "distractions." At the beginning of this post, there is the verse from Philippians 4:8. So often during the past several months, I have been comforted when I have remembered this verse and focused my mind so that it would dwell on things above and not on the "distractions." Patra and I continue to live day by day, counting the blessings which are poured out in our lives.
Patra often tells me after a rough day that she just needs to hold a baby or play with the boys. Being with our family is the best therapy. After a rough Monday, she spent Tuesday with her grandchildren. What a difference a day makes!As I’m finishing this blog post Thursday night, we have returned from Moffitt and my second injection. So far, the side effects have been minimal. Patra has gone to the drug store to pick up some medication for my stomach. The medication makes me very fatigued. The doctor prescribed an anti-nausea medication which the nurses give me prior to my treatment. That seems to be working very well.
Until next Friday. God willing. Thank you for your prayers!
Friday, July 16, 2010
Last week I asked you to pray for our grandson, Andrew (5). This is Jenny’s update.
- I must put the bone marrow transplant behind me. (I confess that I wonder why we had to go through an apparently unsuccessful bone marrow transplant.)
- I need to get my good friend “TUB” ready for action. I struggled with nausea and vomiting while hospitalized. I couldn't have made it without “TUB.” (Throw Up Bucket) According to our Internet research, Velcade has many of the same side effects as the transplant chemo. It looks like “TUB” and I will renew our acquaintance.
- Jenny and Emily are officially put on notice that they may need to fill in for me with the blog. I want them to have time to think of some nice things to say about their “old man.”
- I will count my blessings. Yes, blessings! Patra and I realize the many ways God has blessed us. When we list the blessings, naming them one by one, seeing what God has done (if that doesn’t bring a song to your mind, you didn’t grow up 50 years ago in a Baptist church) we are truly grateful. We are walking through some “tall weeds”** at the moment, but with eternity clearly in view, the blessings far exceed these temporary trials. “For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison.” 2 Corinthians 4:17
So, I will live day by day, but with eternity clearly in view.
Until next Friday. God willing.
** My good and wise friend Tom Bentzel first used the words "tall weeds" in an encouraging email to me early in this journey. It has proven to be a very apt metaphor.
Friday, July 9, 2010
The family (minus a working James) celebrating on July 5th!
(Friday, July 9, 2010) “Happy Birthday, America”
We had a great July 4th weekend. We spent time with all of our children and grandchildren. I really enjoyed the Washington D.C. Capital Fourth of July and Boston Pops television specials. This is a great country in which we live! May God continue to bless this land!
Yesterday I went to breakfast with a good friend and fellow mediator. (It was the first time I had been out to eat without Patra.) I am older than Charles but not that much older. At one point our server asked Charles, “Is this your father?” I had mixed emotions. I felt like I was wasting my disease. Now that my hair is growing back, apparently I just look old, real old.
I officially weighed in this week at 179.2 lbs. (For the record, my normal weight before my diagnosis was 205 lbs.) I’ve lost more than 20 lbs in a month. For years, try as I might, I was unable to lose 5 lbs in a year. Despite its effectiveness, I do not recommend the “bone marrow transplant diet.”
My current weight loss is a good thing because it comes from the loss of fluid. My legs and belly no longer look like the Pillsbury Doughboy. In losing this weight (fluid), I have had no problems with dehydration and there has been no need for replacement fluids recently. (I have specifically asked for prayers in regard to this balance between fluid retention and dehydration several times in the past. We are thankful for this “answered prayer.”)
The doctor is reducing the diuretic because she doesn’t want me to “dry up.” If I kept going, the next time we went to breakfast, somebody would think I was Charles’ grandfather.
179.2. I have learned over the last many months of treatment that it is important to be precise when recording my weight. At the beginning of this journey, I would round off my weight and the nurses would always correct me. “210.4” “197.6” I have decided this is due in part to the fact that they are proud of the industrial strength scale which they use and which is very accurate.
Our home scale is not very accurate. A home scale works for about one week and then it becomes a door stop until it is discarded and replaced by another scale that works for about one week. If you use the scale on tile (bathroom) you automatically gain 5 lbs. By moving the scale onto carpet (living room) you lose 5 lbs. If you lean on your right foot while standing on the scale, you gain 2 lbs. Every member of the family “adjusts” the scale trying to gain an advantage and then justifies this manipulation by arguing that the scale needs to be re-calibrated. It is a little disconcerting to get on a scale that starts at +5 lbs.
Andrew may have figured the home scales out. When he was about 2 he stepped on the scale and I asked him, “how much do you weigh?” He answered, “about 27 inches.”
I think back to the times I would shower in the morning and immediately get on the scale (before getting dressed) hoping I would get a little extra benefit. 179.2 – that is official with all my clothes on, including shoes and pockets holding my wallet and cell phone!
We are doing some tests and blood work this week at Moffitt. We would appreciate your prayers since these tests could be important in determining the next several months of treatment.
We also would ask for your prayers for our grandson, Andrew (5 years old). In the past, we might have waited to voice this prayer request until we had more information, but as I told his mother, we have some powerful prayer partners and we need to get them started. Your prayers are more meaningful than you could possibly know!
Recently, Andrew has been having severe and frequent headaches. His pediatrician ordered an MRI and his doctors feel that the radiologist’s findings should be further investigated. Andrew has an appointment next week with a pediatric neurosurgeon at All Children’s Hospital. (We are blessed by having All Children’s in St. Petersburg.) The doctors have relayed to Jenny and David that, even though a neurosurgeon has been brought into the picture, it doesn't necessarily mean he'll need surgery.
So we solicit your prayers for Andrew, Jenny and David (and for good measure, Grandma and Grandpa.) It is hard for Patra and I not to think of Andrew. When we were at Moffitt this week, we both wanted to ask every nurse and practitioner we saw not about amyloidosis but about pediatric neurology.
As the regular readers of this blog know, my special time of prayer is usually between 2:00 a.m and 4:00 a.m. I have never heard a direct voice from God but there are times when He is so real it feels like we are having a conversation. This week, as I prayed for Andrew, that brought me incredible peace.
“Bob, I know how much you love him. Have you thought about how much I love him? I love him so much that I sent My only begotten Son to give His life for him. I will hold Andrew and Jenny and David in My arms and never let go … and Grandma and Grandpa, too. Now, get some sleep.”
Until next Friday. God willing.
Jenny, Andrew, and Megan
Emily and Austin
Sharon and Avery
Friday, July 2, 2010
On our trip to the Mayo Clinic in Jacksonville, Patra’s cell phone crashed. “Can you hear me now?” So while I took a nap, she spent Saturday afternoon at the cell phone store in Gainesville exchanging her phone. Later that night she discovered that her new cell phone would not accept a charge. So after lunch on Sunday, we were back at the cell phone store. The young lady that “helped” her kept saying “your phone is crazy.” I don’t want to name our cell phone company, but the process of fixing her phone was not a “sprint” but a marathon. After waiting a while outside, I went into the store thinking my “appearance” might expedite the process. I would have wanted to quickly get me out of the waiting area. I honestly believe I could have passed out on the floor and they would not have moved any more expeditiously.
Speaking of “appearance,” I mediated a case last week and noticed well after it started that I had never buttoned or even straightened my collar after putting on my tie. I was horrified when I went to the bathroom and saw myself in the mirror. I went back and apologized to the clients. At least my zipper was up. One good thing about being sick is you get some “passes.”
“It’s OK, Mr. Bugg, I just figured that in your condition that was how you dressed.”
As we drove into Jacksonville, I was anxious. Sometimes it is difficult to believe that our lives have changed so much so quickly. A year ago, I would not have imagined going to the Mayo Clinic. Even less on my radar screen a year ago was the fact that such a trip would be caused by a “nasty little disease.” I had never even heard of amyloidosis. So I closed my eyes (which was OK because Patra was driving) and prayed. As has happened since the beginning of this journey, scripture came to my mind and brought comfort and peace, relieving my anxiety.
The Jacksonville Mayo Clinic is an absolutely beautiful facility. It is like a resort with beautiful fountains, gardens, art work, etc. Like Moffitt, it is staffed by wonderful people who are very caring and helpful. We met with the doctor who was quite impressive and very knowledgeable about my disease. It was a “hard visit.” “Hard” because we didn’t hear a lot of encouraging news. The doctor was brutally honest. There was no “sugar coating.” (At times, I wanted to put my hands over my ears and loudly chant “la la la la la.”)
He emphasized that I have a “nasty little disease” and the prognosis is not good. By and large, the meeting was a confirmation of what I had learned at Moffitt. There are no cures but medical advances are made every day. He explained that the doctors have two goals – first, to prolong my life, which will hopefully allow time for medical advances to find an answer. The second goal is to give me a good quality of life. (For the record, I firmly support both of these goals!)
He will write a letter to my doctor at Moffitt with specific recommendations for additional tests and treatment. I have an appointment next week at Moffitt so we can discuss this input.
During the drive home, Patra and I had a serious but wonderful conversation. (The conversation lasted until I had to take a nap.) We often tease that after so many years of marriage we share a brain. We complete each other’s thoughts and sentences. One of us will say something and the other says, “that is just what I was thinking”. It is very comforting to know that Patra and I are united in approach and perspective with respect to this journey.
We agree that our #1 goal is that God use whatever happens to His glory! We don’t know how that will happen. There have been some “hints” even in the response to this blog. We have been blessed by people who say they have been reading about our journey and we have been humbled by those who say they have been encouraged by the blog and are praying for us.
We pray that the doctors’ goals of living longer and having a good quality of life are part of His will, but we agree that our primary goal is that God use whatever occurs to bring glory and honor to His name. We pray that we will be faithful to do our part. We know that we were created for His glory. “Everyone who is called by My name, And whom I have created for My glory…” Isaiah 43:7 (NASB)
It is difficult to accept the “hard news” because I have been doing well. I am definitely getting stronger. For example, until this week, after dressing for work, I would need to sit and rest for several minutes to get enough strength to get in the car and have Patra drive me to the office.
I appreciate that you remember to pray for Patra. When we returned from Jacksonville, she had an endoscopy at Morton Plant. It revealed that she has a “healing ulcer.” She had experienced pain while we were in the hospital at Moffitt in March. It is not easy being a caregiver. The most recent issue of Time magazine (July 5, 2010) reported the following: “Living with an illness can be as taxing to the caregiver as it is to the patient. People who tend to ailing loved ones over long periods frequently suffer stress, burnout and poor health.” We can testify to the truth of this statement.
Tuesday, I drove myself to get a haircut. It was definitely the shortest haircut on record.
“Just trim it up, don’t take any length off the top.”
“There is no length on the top.”
Until next Friday. God willing.