Not much happened today which is what we expected. I did get another IV bag of calsium because the plasma pheresis treatments strip too much of the calcium from your body.
Debbie pushed me down to the cafeteria and later the in-hospital Starbucks. Before that we had a nice visit from Ben and Betty Davenport. They gave us a great report on worship at our church this morning. Several other friends and my dad called, and we enjoyed hearing from each one.
Tomorrow I am told I will have a swallow test, a surgical biopsy of another lymph node, and my fourth plasma pheresis treatment. We appreciate more than you can know all of the prayers, calls, cards, and visits. We feel your prayers which give us strength each day. Pray for a definite diagnosis and treatment plan this week. We are at peace with whatever comes our way.
When the doctors came around today, I asked them if I could be home by Friday. The head doctor asked, “Why, do you have something you want to do Friday?”
I said, “I’m a pastor and I really want to be at church on Esster.”
Both doctors looked at each other and decided that there was no reason I couldn’t be home by Good Friday, barring any further complications.
So that’s the plan: home in time for
Easter! Keep praying, please.
Let’s get right to it: the needle biopsy of a lymph node under my arm showed no cancer. Normally that would be good news, but the doctors were skeptical that it would show anything from the beginning.
That means on Monday I should have a surgical biopsy where they take a whole lymph gland. Unfortunately the “brightest” one is near my aorta, but there are others that are more accessible.
I also had another plasma pheresis treatment today. They seem to be helping as I have regained some leg strength. Still need a walker and PT is coming to work with me tomorrow.
Other than that we’ll be hanging out by the pool soaking up some rays this weekend. Not. Anyway my goal is to preach Easter Sunday. Please pray that I’ll be able to do that. We have so many dear friends both near and in other places. We appreciate your cards, visits, prayers, and thoughts. As Paul said, “I thank God for you….”
This morning as the doctors made rounds and checked me, my right leg showed some improvement. I am now able to lift my right leg and bend my knee. Two days ago I could not do this. So it seems like the plasma pheresis treatment is working.
I slept well last night. The doctors also disconnected me from the heart, oxygen, blood pressure monitors and moved me to a new room, 4101. I got to shower this morning and put on sweatpants and a T-shirt, rather than the revealing hospital gowns.
The biopsy results will hopefully be ready on Friday. One of my doctors told me I would be here at least five more days. However, if the biopsy did not yield enough tissue for an accurate diagnosis then they will surgically remove a complete lymph node to biopsy.
This is not a journey we chose, but we can feel your prayers sustaining us along the way. We’re not worried or fearful and we are in the hands of the God who made all things. I can’t think of a better place to be.
Today was a busy day. Just as I was about to eat my oatmeal, the nurse came and took it away because my biopsy was scheduled for sometime today. A bevy of doctors examined and talked with me throughout the day. Physical and occupational therapy put me through the paces.
In the afternoon I had another plasma pheresis treatment. While that was going on for over two hours, additional doctors came in. Then, because I mentioned some chest pain, the EKG cart showed up. All the people in my room reminded me of that old Groucho Marx movie where people keep coming into his hotel room until they all tumble out the door!
Finally at 4 PM, they came to get me for my biopsy. The team decided that a lymph node under my right arm was the most accessible. After considerable probing they finally got a large enough sample to test. Lab work will take 2 days, so by Friday we should know if I have lymphoma.
Thank you for all the cards, prayers, visits, emails and all the other expressions of help and concern. We love each of you and we’re still trusting the God of the Angel Armies (as Eugene Peterson says) for His healing power.
Today the PET scan showed several suspect lymph nodes in my neck, chest, and abdomen. According to the doctor, these were “lit up more than they should be.”
Tomorrow the hematology physicians meet with me. The plan is to figure out which lymph node to biopsy for suspected lymphoma. Of course there are many types of lymphoma, and there is also the possibility that an infection caused the lymph nodes to light up.
So, as Jesus said (my paraphrase) “Don’t worry about tomorrow…” We’re trying not to get ahead of ourselves but wanted each of you to pray with knowledge of this development. We know God is with us on this journey where ever it leads.
I had a busy day today. From 9 am until almost 2 pm I was in the EMG clinic having tests on my nerves and muscles. I’ll get a full report tomorrow but basically my body is attacking the myelin surrounding my nerves. That accounts for the pain and loss of function.
After I got back to the room about 2 pm a doctor came and explained where we are. They believe I have a variant of Guillon-Barre syndrome. However, they aren’t sure and the possibility of lymphoma still exists.
My medical team recommended we start treatment now since my condition continues to deteriorate. So today I began a series of 5 treatments to remove antibodies from my blood. This is called plasma pheresis.
This procedure lasts almost 2 hours and involves running all my blood through a process that removes antibodies and replaces them with albumin to keep the volume of blood the same. I’ll have a treatment every other day until I have 5.
Additional tests might include another spinal tap, a PET scan, and waiting for blood panels to come back. A chaplain came by and prayed for me today, which is what I would ask you to do also. We are confident in God’s grace and mercy, and your prayers sustain us during this time.
Several doctors came by today, including the main doc in charge of my treatment. I am not using their names because Duke has a social media policy that protects the privacy of their staff, which I understand.
The good news is that this appears to be a peripheral nervous system disorder, not a central nervous system problem. That’s good because the PNS has more ability to repair itself than the CNS. Tomorrow I have an EMG which is a conductivity test. The doctors believe this will tell them a lot. Also we’re waiting on blood work from California and the Mayo Clinic. So I’ll be here a few more days before we know exactly what the deal is.
The not so good news is that my right leg is much weaker today, and my left is following it. Even with my walker, walking is much more difficult. If this continues I will not be walking on my own soon. However I have lost 16 pounds, so its not all bad!
So many of you have asked about specific things like Guillane-barre and lyme disease. They are checking both plus lots of other possibilities. So keep on praying please. We’re doing fine, and our confidence is in God’s goodness and mercy.
I had an uneventful move to Duke University Hospital last night. and I slept most of the night for the second night in a row, so that was very good. This morning I met my medical team as they made rounds. On Saturdays not much in the way of testing takes place, but of course they did draw more blood several times today.
The next step is a nerve test called an EMG I think. Also they are still waiting on blood panels (a series of blood tests related to one aspect) to come back from a California lab, so hope too have those early next week.
I did walk about 25 feet and back today using my new walker, so that was good. Pain management is improving but we need to find something other than morphine as it has obvious drawbacks including rebound pain if used too long. My right leg is noticeably weaker when the doctor tested me this morning, and I noticed it when walking this afternoon. Some additional muscle problems have developed in my lower bowel. Without being too graphic, this is not a good problem to have.
Please continue to pray. Our confidence is in God who does all things well.
My symptoms of loss of sensation and use are progressing. My doctors are transferring me to Duke University Medical Center to neuro muscular specialists. More later when we know more. Thanks for your prayers.