Have you ever noticed how little children beg for a bandaid when they get hurt? My boys always did. It's like they have some magical power to make all of the pain and hurt disappear. The infusion treatments I have been receiving I refer to as my bandaid. It doesn't really fix what is wrong just makes things a little better for a short while. I had my third infusion yesterday. I had hoped that I would be feeling much better by today but the overall weakness is still with me. I tolerate the leg weakness much better than the whole body fatigue. I guess today will be a pajama kind of day. I don't care for them much - I'd much rather be at work with all of my buddies. Have I told you I work with the best people in the world?? Without them I would be a mess right now. I cannot be there and not smile. God knew where I needed to be at this time in my life. Any doubt that God is sovereign? Ask me and I will prove to you over and over that He is.
Next week on Tuesday I will go to the Sparks Center at UAB for the nerve tests. For those of you prayer warriors out there please pray that these tests will help to form a final diagnosis and treatment plan. My body is so weary and I m ready to get that real bandaid. The one that will hopefully get to the root of the problem. I know I have a rough road ahead but am anxious to get on with it. I have so much to live for and am ready to begin the fight.
My blogs will have much scripture in them as I need them now more than the air I breathe. I hope that my walk with the Lord during this will show you that He is very present in our time of need. He gives me scripture after scripture to cling to for hope. For those of you who know how crazy I can be I'll tell you I even slept with my bible last night. Whatever I must do - I will do.
I love this one. . .
Behold, the eye of the Lord is on those who fear Him, On those who hope for His lovingkindness, To deliver their soul from death. Psalm 33:18-19.
I am counting on His lovingkindness right now to help me get well.
Well that's all of the energy I have for the day so until next time. . .
Thursday, November 20, 2008
Thursday, November 13, 2008
Closer To A Diagnosis
We arrived at 9:30 yesterday to see Dr. Salzman, my bone marrow transplant doctor. After running many more tests she confirms her suspicions that what I have been experiencing is due to a rare form of bone cancer called POEMS syndrome. In a few weeks I will undergo a nerve biopsy as well as a few more tests to solidify the diagnosis. These tests have been ordered by a top neurologist at Kirklin by the name of Dr. Oh. Dr. Salzman feels that if Dr. Oh confirms the diagnosis we will then begin the transplant process.
We talked for quite a while about the transplant process in detail. First I would have a catheter line placed then the next day would have my first dose of chemo, Cytoxan. Next would be a week of Neupogen shots to cause my body to mass produce stem cells. The overproduction would allow the stems cells to overflow from my bone marrow into my blood. Then a dialysis like machine would then filter my blood and spin the stem cells out. They would then capture these and freeze them. A three week period would follow with no treatments. At the end of this period I would be admitted to the hospital and the transplant process would begin. I would likely remain hospitalized for three to four weeks post transplant. We did not discuss anything past this point.
I will end this post with my thoughts on all of this. A nurse yesterday put it so eloquently into words. She said, "Sweetie, the good Lord has your days numbered. You are in His hands right now." I have to admit I am at times scared to death with the what lies before me but I leave you with a scripture He left me yesterday that comforted me very much. It comes from the 33rd chapter of Deuteronomy in verses 26 - 27.
We talked for quite a while about the transplant process in detail. First I would have a catheter line placed then the next day would have my first dose of chemo, Cytoxan. Next would be a week of Neupogen shots to cause my body to mass produce stem cells. The overproduction would allow the stems cells to overflow from my bone marrow into my blood. Then a dialysis like machine would then filter my blood and spin the stem cells out. They would then capture these and freeze them. A three week period would follow with no treatments. At the end of this period I would be admitted to the hospital and the transplant process would begin. I would likely remain hospitalized for three to four weeks post transplant. We did not discuss anything past this point.
I will end this post with my thoughts on all of this. A nurse yesterday put it so eloquently into words. She said, "Sweetie, the good Lord has your days numbered. You are in His hands right now." I have to admit I am at times scared to death with the what lies before me but I leave you with a scripture He left me yesterday that comforted me very much. It comes from the 33rd chapter of Deuteronomy in verses 26 - 27.
There is no one like the God of Israel.
He rides across the heavens to help you,
across the skies in majestic splendor.
The eternal God is your refuge,
and his everlasting arms are under you.
He thrusts out the enemy before you;
it is he who cries, "Destroy them!"
He rides across the heavens to help you,
across the skies in majestic splendor.
The eternal God is your refuge,
and his everlasting arms are under you.
He thrusts out the enemy before you;
it is he who cries, "Destroy them!"
What a wonderful God we have who promises help when we need it most. So many of you have been used by Him to comfort me this past year and I want you to know that I couldn't do this without each and every one of you. You are my treasure - the wind beneath my wings.
Sunday, November 2, 2008
My illness returns
I should have known after a glorious summer spending hours in my Beth Moore bible study, Believing God, that I was about to begin the second phase of this intense test of faith. God in his goodness was preparing me for a literal fight for my life.
I began to have those same strange weak feelings in my legs. I phoned my neurologist, John Riser, to schedule an appointment. Upon seeing me he agreed that something just wasn't right and he ordered some blood work. About a week later he phoned me to tell me that he had discovered an immune deficiency that would need to be treated with infusion treatments once a month - probably for the rest of my life. I was overwhelmed but was glad that he had discovered the root of the problem - so I thought. He referred me on to a hemotologist/oncologist, Luis Pineda, to follow the immune deficiency. When I went to see Dr. Pineda he agreed with Dr. Riser's findings but felt that he needed to do additional testing. When these test results came in he floored me with the results. His words to me were, "My dear you are going to need a bone marrow transplant." My head started reeling and I just couldn't imagine how a relatively healthy 42 year old could be this sick. I cannot explain how I felt at that moment but complete terror would probably suffice. I was now referred to Kirklin Clinic where I would see a team member of the transplant clinic.
I began to have those same strange weak feelings in my legs. I phoned my neurologist, John Riser, to schedule an appointment. Upon seeing me he agreed that something just wasn't right and he ordered some blood work. About a week later he phoned me to tell me that he had discovered an immune deficiency that would need to be treated with infusion treatments once a month - probably for the rest of my life. I was overwhelmed but was glad that he had discovered the root of the problem - so I thought. He referred me on to a hemotologist/oncologist, Luis Pineda, to follow the immune deficiency. When I went to see Dr. Pineda he agreed with Dr. Riser's findings but felt that he needed to do additional testing. When these test results came in he floored me with the results. His words to me were, "My dear you are going to need a bone marrow transplant." My head started reeling and I just couldn't imagine how a relatively healthy 42 year old could be this sick. I cannot explain how I felt at that moment but complete terror would probably suffice. I was now referred to Kirklin Clinic where I would see a team member of the transplant clinic.
Thursday, October 30, 2008
The test of faith begins
The biggest test of my faith began just over a year ago - about August of 2007. I had been having a strange feeling in my feet for maybe a week or so. Don't know if I can explain a weak feeling in your feet but that is what it was like. It progressed to my legs and then my hands. I quickly began to lose the ability to walk which sent me to the emergency room. Doctor's began running all kinds of tests and we finally settled on the diagnosis of Transverse Myelitis. This is an inflamation of the spinal cord as a result of some type of previous illness. The doctors decided that my bouts with shingles was the trigger to the onset of the myelitis. After about 8 weeks of bedrest I slowly began regaining the strength in my legs and hands and soon was back to normal. This lasted until the following August of 2008.
Subscribe to:
Posts (Atom)
