Friday, November 12, 2010 "Rare and Radical"
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.
Bob
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.
Bob
Comments
Continue to mend my friend, your messages are so important to us.
Ted & Carol W
Lex and I could hardly wait to get to our friend's computer here in Pigeon Forge to hear from you this morning. It seemed as if we are there with you as you give your testimony today.
WOW!!! How wonderful our GOD is to us. We are rejoicing with you more than we can express.
Congratulations, Grandma and Grandpa.
Remember, we LOVE you and are continuing to pray and praise!!
Hang in there and don't freeze.
Remember the Battle of the Bulge; don't give up.
Lex and Linda
We have been silent through the ordeal to You but not silent to God. We have prayed daily for Your Peace and Blessings. Please know there are Prayers Loud and Clear from South Carolina. We Love You and Thank You for keeping us all updated. GodSpeed !!
Tim and Cathie Wylie
Melissa and Kyle Price
Pat and Rea Mennenga