Thursday, April 11, 2024
Weight: 302 lbs (-3 lbs)
Steps: 1550 / .75 miles
Wednesday, April 10, 2024
The mail brought a shock today. It was the first bill for chemo. No one thought to inform us that each infusion is billed out at almost $40,000 and that we were expected to pay our percentage ($1,800). Again, God has a plan. We've been saving for a while to have the siding replaced on our home, so God has provided what we need to make all 4 chemo payments.
Sunday, April 7, 2024 Back to Top
I wasn't sure how today would go, so I got up a little early just in case there was a dirty diaper to handle. Thankfully, that didn't happen. By the time I finished with Adam, I was exhausted, but I had an extra 30 minutes before I needed to leave for church, so I took a nap (really needed that). By the time we finished worship rehearsal, I knew that the energy wasn't going to last long, so I left after worship and got another nap. Yes, there was a diaper change before the day was over and it took both of us.
Saturday, April 6, 2024
From here on, there might not be as much to report unless there are blood tests, doctor visits, etc. I spent some time making things look a little more organized here on the site. I'm always up for suggestions. I hope to start posting more about my recovery: weight (yes, I don't care who knows), excersize, steroid reduction, and things like that. We've come this far together. I hope we can keep the prayer going to the end of this particular journey and through to the beginning of the next because I'm reminded that God will continue to shape and mold us until we are the reflection of His Son, Jesus. The journey ends in His presence... or does it just begin? As I many times heard a dear friend express it, "I may not know exactly what God is up to, but I know this for sure, I want in on it!"
Adam is still without a nurse on Sunday, but Debbie and I have a schedule worked up for the morning, so unless something goes sideways tomorrow, I'll be able to join the worship team tomorrow. I am so looking forward to it!
Tuesday, April 2, 2024
White Blood Cells: 10.9 Thous/mm3
Red Blood Cells: 4.53 Million/mm3
Hemoglobin: 16.5 g/dL
Weight:306 lbs
Dr. Visit: 9:15 AM
Doctor Bit was satisfied with my numbers and has slightly accelerated getting me off of my steriods. The part I don't like is that while I have been getting skinnier at the waste, I'm gaining water weight due to the steriods. The doctor thinks that I will start to feel better as I keep dropping the steriods over the next 2 months, but he warned me that my weakness will continue for some time later. He will see me again in 4 weeks, but I will have labs every 2 weeks for now. I'm going to start trying to do more to exersize.
Adam has recovered from his C-Diff but will stay on his meds for a couple more weeks. We're still looking for a home nurse to fill one more shift on Sundays.
On the other medical fronts, I still haven't heard from either my urologist or cardiologist. Maybe they will wait until I'm off the steroids and my symptoms will disappear. One can hope.
Sunday, March 31, 2024 (Easter Sunday) Back to Top
We started today back in the hospital. Not because of me, but because Adam develops C-Diff, a nasty bacteria that takes over digestion every few months. When it starts on the weekend, the only way to get it treated quickly is to take an ambulance ride to the emergency room. In a way, this is a blessing to me as today is my one day a week to care for Adam. His nurse told me before leaving Saturday to simply send him to emergency and let them collect their "samples" for testing (required) and they would take care of the cleanup. Sure enough, they were finishing up with him, by the time they let me go back to him. They also brought me a recliner and I was able to take a nap while we waited on lab results. We've been here for only 2.5 hours and the doctor is ordering his meds and starting his discharge which will make this one of the shortest emergency room stays in over 10 years of treating this problem. Thank you, Jesus!
LOL! Still a short stay, but it's now 4 hours. We're waiting for an available ambulance which I believe has just arrived.
Friday, March 29, 2024
WOW, GOD!
The last two days have been really stressful mostly because of the situation with Adam. I woke up in the middle of the night thinking about what else I needed to do to be prepared to move my son out of our care. I was convinced that this was God's will since all my communications with the nursing agencies were getting "nobody available." This morning I got a call from the agency we've been with for over 20 years, saying that they had scheduled our remaining part-time nurse, Nelda, from 3 days to 6 days a week and were prioritizing finding someone to fill the last day. I felt like Abraham and Isaac when God stopped Abraham in his tracks and saved his son. The only day we have left now is every Sunday. Debbie and I are going to tag-team the day and make it work so I don't wear out too quick. Thank you, thank you, thank you for praying!
On the medical front... I have not yet gotten an appointment to see my urologist about the MRI, nor has my cardiologist moved my initial appointment any earlier than late June. I will be seeing my oncologist on Tuesday to discuss how the chemo has worked on my leukemia. Pray my numbers stay good. Thanks!
Wednesday, March 27, 2024
And the journey continues...
I drove to Springfield early this morning to have a specialized MRI on my prostate. I had the report on my phone within 2 hours. They found a single spot about the size of the head of a pin and declared it cancer. It is not connected neurologically or vascularly and the nearby lymph glands are not affected. I now wait for the urologist to contact me with an appointment to tell me what happens next... either a biopsy or a surgery. Thank you for adding one more item to your prayers for us.
I spent the rest of today communicating with with nursing agencies and nursing homes. The sad news is that there are no home nurses available, so we are turning our attention to moving Adam to a permanent facility. I had a meeting today with the director at Shepherd of the Hills (only 1.5 miles from our home). We have only a few more days before we lose our nurse so we would appreciate your prayers that God directs us to the right place at the right time.
Sunday, March 24, 2024 Back to Top
It was another wonderful time of worship at church today, but it seemed to leave me more exhausted than last week (sorry, Pastor, if I closed my eyes). I got home and ate lunch then slept for over an hour. My daughter, Dawn, and family arrived late this afternoon and we're enjoying visiting together. They live on the east coast so we don't get to see them too often.
Be praying this week for Adam. I will be contacting our nursing agencies to see if anyone is available and I've obtained the number to begin the process of finding an appropriate care facility if needed. This, too, is just another part of the journey as is this next item...
I'll be in Springfield for an MRI on my prostate early Wednesday morning. I'm hoping that there is nothing to find, but even if there is, God already has a plan.
Friday, March 22, 2024
Email address works now! It took all day with tech support, but we got it working in the end.
Today was a duplicate of yesterday, but haven't heard back from the two nursing agencies yet. Keep praying!
Thursday, March 21, 2024
Sorry about the email address above not working. Apparently I'm not that good at setting up blogs and addresses at the same time. Setting up one took the other down. I promise to have it working properly by tomorrow morning (after a chat with tech support).
Amazing thing, prayer. I posted about Adam yesterday, and the same nursing agency that said they had no one to consider, suddenly was asking about the possibility and doing scheduling changes with a possible new hire and our remaining nurse. The two agencies are talking tomorrow. I'll keep you updated.
Went back and forth to the convention center again today, but now I walk down with Debbie on her scooter and drop her off at her table for meetings, while I drive her scooter back to the hotel to rest and work. I then drove it back to meet her for lunch and did the same for the end of day. Keep up the prayers!
Wednesday, March 20, 2024
We got up and finished packing this morning to be gone three days. Debbie and I decided on a new strategy for driving this time. She would drive for the first two hours or so and then I would drive the last hour to Little Rock, Arkansas. I slept for a good part of her driving and felt good to finish. Once we arrived, we had to go to the convention center which was about a half-mile walk with Debbie on her mobility scooter. There was then a walk around the center to find registration and then to her table (far end of the row). We then went back to our hotel and rested for about 45 minutes before we had to meet a coach to take us to our first activity, a buffet dinner at the Clinton Library. After returning to the hotel, my pedometer says I walked about 2.75 miles today. I was exhausted but seemed to recover after about an hour or so. We have a new plan for tomorrow...
Also, we learned today that the person that might have been interested in being Adam's new nurse has decidded not to apply and so far there are no other candidates available. With both Debbie and me having health issues, this has sparked a discussion we thought we'd never have about how to take care of Adam if we can't physically take care of Adam. Please be praying for wisdom from above as we consider our options, what would be best for our son, and what God wants us to do.
Tuesday, March 19,2024
My Final Chemo Infusion
White Blood Cells: 7.9 Thous/mm3
Red Blood Cells: 4.76 Million/mm3
Weight:297 lbs
Dr. Visit: 8:15 AM
Doctor Bit was encouraging this morning. He said all my numbers looked good and that today would be my last chemo. He said I still have my atrial flutter but my heart rate was good overall. My infusion went well. I slept through most of it. As usual, I felt a bit overheated, but I was able to accomplish several things at home. My next appointment will be in two weeks. During that time I will be seeing my cardiologist and getting an MRI on my prostate. It will be 10 weeks before I am weaned off my steroids and hope to get back to normal.
Tomorrow we are on our way to Little Rock for 3 days for a travel conference. I'll let you know how it goes.
Sunday, March 17, 2024 Back to Top
A good night's sleep and I felt good... for about a half hour. After my shower, I had to lean against the wall for a few minutes. Breakfast made me feel better and going to church for worship and the Word of God was great, but it did sap my strength. I had a great time of fellowship with the worship team for our annual lunch today as well. By the time I got home, I fell asleep for almost 2 hours. Feel much better now. I'm learning how to maximize my strength.
Saturday, March 16, 2024
Had a great time at our Men's Prayer Breakfast today. As we were praying, I was talking to God about my diminishing strength to accomplish even simple tasks. His response was clear. "Why is that a problem? When you are weak, then I can be strong in you." Message received, Lord. Help me to live in your strength.
Another thing I got this morning (thanks, Ben) was to be like Jesus when encountering the storms of life (music above). He took a nap until it was time to act. I love this group of guys!
Thursday, March 14, 2024
Wow! What a difference a good night's sleep makes! I've had a song in my head through most of this journey and I felt like today was a good day to post it above. I recorded "Through Every Storm" with The Sons about 10 years ago and I have to admit that when I played it today, I cried. They were joyful tears because God is bringing us through each and every storm. It seems like it's all piling on, but then He brings sunshine to remind us He's in control. More later... maybe.
Wednesday, March 13, 2024
Rays of Sunshine
My strength was low today, but I managed to get a few things done. I heard from a nursing agency that they were processing a gentleman who was interested in being our full-time nurse for Adam. We're praying that he will be acceptable to the agency and able to start soon for training.
Since I'm on a time-release drug for my heart rate, I decided to test myself on the bed for short periods of time to see if my heart runs too fast. I had only one short spike that settled back down quickly, so another ray of sunshine today. I'll let you know how it worked out tomorrow. Thank you, Jesus, for our prayer partners that are praying us through before they even know what to pray for!
Tuesday, March 12, 2024
Sometimes You don't get a Choice
White Blood Cells: 6.4 Thous/mm3
Red Blood Cells: 4.56 Million/mm3 (Low)
Weight:294 lbs
Dr. Visit: 9:15 AM
Last night was pretty rough as my heart seemed to be pounding in my ears and I was sweating all night, but I was looking forward to getting my last chemo and the feeling of what I hoped was the beginning of the end (at least for now) of this journey. The doctor looked at my vital signs and then checked my heart beat. He apologized for what he was about to do, cancelled my chemo, and put me in a wheelchair and sent me to the emergency room at the other end of the hospital saying my heartbeat was too rapid and irregular. I spent the rest of the day in emergency getting fluids, more drugs to bring down my heart rate, and blood tests to check for the presence of an enzyme that would indicate whether there was any damage to the heart. The emergency room doctor said that I had an Atrial Flutter which may or may not be the result of the physical stress brought about by all the drugs I'm taking.
I drove myself home about 3:30 PM with two new drugs in my growing arsenal of pills I take every day. One pill slows down my heart and the other is a blood-thinner to guard against blood clots causing a stroke. I also will soon have a Cardiologist to add to my growing arsenal of doctors that I have to see regularly. I was exhausted.
The night brought it's own challenges. The moment I laid down on my bed, my heart rate immediately rose to over 140 bpm and stayed there as long as I was horizontal. I eventually decided I would sleep in my recliner where it was better than no sleep at all. My heart rate went back down and I slept about 7 hours. The thought came to me as I finally drifted off to sleep, "Why did I have to mention Job?"
Sunday, March 10, 2024 Back to Top
What a wonderful time of worship and challenge from the Word of God today. Admittedly, I was pretty worn out after worship rehearsal and the service (playing keyboard and singing), but God was good to His Word to provide me strength to make it through. I went home, had lunch, then napped for 1.5 hours.
Saturday, March 9, 2024
That's what I get for saying, "I'm sleeping well." It was a restless night, but I did sleep for 8 hours. Went to see the launch of Where Jesus Walked at the Dutton Theater. I was a bit tired when we got back, but not too bad. Accomplished several things today and going to bed early because of the time change. So looking forward to being in church tomorrow. I missed everyone last week as well as the worship and preaching.
Thursday & Friday, March 7 & 8, 2024
Not much to talk about these two days, which I count as a good thing. I feel more recovered from the traveling now and over these two days I felt like I was accomplishing more with my brain (more programming - less foggy-headed). Of course, I'm not completely trusting myself to program large things yet. I've learned to take small bites of code at a time. When I think I'm done, I send it up to my nephew-in-law and business partner, Jimmy, to test it thoroughly and let me know what else is to be done. I've really appreciated Jimmy helping to carry me through this journey. He's been handling all correspondence with our customers and keeping me on track.
On a medical note, my doctor has begun to slowly reduce my steroid intake. It will take 12 more weeks to get me back to 0 mg. I'm also back to sleeping well. Thank you all for walking with me!
Wednesday, March 6, 2024
New Prayer Requests
My oncologist wanted me to see a urologist to check out a slightly elevated PSA. That appointment was today and Dr. Givens found a small lump on my prostate. The next step will be a specialized MRI in Springfield (TBA). Then there will be a biopsy, but the Doctor will wait until after my last infusion before doing it. Honestly, I laughed as I left the hospital this morning because Job has always been one my favorite Bible heros. My trials are nothing like Job's, but I so clearly see that there is nothing that can come our way that God hasn't prepared our path through.
But wait, there's more...
When I arrived home this morning, we were informed that we are losing one of our handicapped son's nurses at the end of the month and our agency that supplies our nurses have no one to take his place. We are calling other agencies to get help taking care of Adam the remaining four days per week. The journey continues... Thanks for the extra prayers.
Tuesday, March 5, 2024
White Blood Cells: 8.3 Thous/mm3
Red Blood Cells: 4.25 Million/mm3 (Low)
Weight:297 lbs
Dr. Visit: 8:45 AM
Doctor was still positive as my numbers continue to improve... with the exception of my glucose which was up from having too much bread and deserts at the travel conference. That should balance now that I'm back on my protein diet.
3rd Infusion: 9:45 AM - 3:15 PM
I slept almost half of my time in the infusion. I think it was being worn out from travel, but the chemo didn't help. No real pain today, just tired.
Monday, March 4, 2024
Home Again and more blessings!
We arrived back in Branson at 2:15 today and went straight to the outpatient clinic for my labwork. As I entered the waiting area, I spotted two of the first friends I made in Branson 28 years ago, Greg and Karen Winters. Greg and I played opposite each other in a local production of "Fiddler on the Roof." He was Tevye and I was Lazar Wolfe. It was a joy catching up which I needed after all the travel. There is also the blessing of having new prayer partners in this journey.
After the labs, we went home, unpacked, and I fell asleep in my recliner for an hour.
Sunday, March 3, 2024 Back to Top
Got over 8.5 hours of sleep last night (felt pretty good), but after getting going early again this morning to get breakfast, and get Debbie to her last 3 hours of meetings at the convention center, I came back to the room to nap again, pack the car, work a little bit, then one more trip to the convention center and hit the road again. My fitness app on my watch informs me that I met all my walking goals for the past week and I’m not sure that’s a good thing in my situation (smiling weakly). We are now halfway home and I’m not as tired as I have been. I’m not sure if I feel better the further away from my last chemo or if I’m finally building up my stamina or both.
Saturday, March 2, 2024
Lost Day
It’s now actually Sunday, and I’m trying to remember what happened to Saturday. To begin, I did not sleep well on Friday evening (woke at 4 AM Branson time). We ate early and had to be at the convention center (a good walk) at 8:00 so Debbie could be prepared for meetings. I used the opportunity to meet with a few theaters that were represented to talk about software, then we had a conference lunch together. By that time, I was exhausted and went back to the room to nap and work for the afternoon. I walked back to the convention center to get Debbie, have dinner, then back to the room. I tried to work some, but was exhausted again, so I apparently laid down without writing and went sound asleep.
Friday, March 1, 2024
Lesson Learned
I had a surprisingly great sleep last night after our long journey (hotel beds and I do not normally get along). We got going early this morning to make the last 3 hours of the trip and prepare for the travel conference. After 8 hours the day before, I thought 3 would be no issue. I was wrong! My body started shaking before we even got to our room. Eating lunch helped, but most of the day I felt dizzy, exhausted, and swimming through a thick fog.
We had a break late afternoon and I laid down for a while, but couldn't sleep. It's now late evening and my body has finally quit vibrating (after consuming large quantities of protein for dinner). I'm learning that even though God allows me to push myself, there still may be a price to pay for moving forward too quickly. We have decided that the return trip will involve both of us driving so I can take nap breaks. We will also not be taking any more long trips in the car while I'm on this journey.
Lord, give me wisdom to know the difference between what I can do and what you want me to do. Thanks to all of you for praying me through!
Thursday, February 29, 2024
Long Day
Today was a travel day. Debbie and I are going to a travel conference in Indiana (Debbie is Groups Manager for the Dutton Theater). The conference is between my infusion dates, so I'm the chauffeur, strong man, body guard, errand boy, and companion. By the time we got packed and I handled a couple of business emergencies for my software company, it was almost noon. I wasn’t sure how long I would be able to drive, but God gave me strength for 8 hours. I confess, though, that my whole body feels like I’m vibrating and I’m exhausted. Hoping for a good night’s rest.
I’m reminded of a new (to me) song we learned for worship last Sunday, “Strength Will Rise as We Wait Upon You, Lord”. Every day I’m asking for rising strength to accomplish His will. I don’t think I say this enough: Thanks for Praying! You’re making a difference in my life!
Wednesday, February 28, 2024
Started today with good energy, but apparently pushed myself a little too hard trying to complete several tasks today. Just a little headache and cloudy brain. Hands are shaking hard as well. Still feeling positive after yesterday with my doctor and I remain confident that the Great Physician has me right where He wants me for His plans.
Tuesday, February 27, 2024
Bigger Blessings
White Blood Cells: 6.8 Thous/mm3
Red Blood Cells: 3.67 Million/mm3 (Low)
Dr. Visit: 8:45 AM
I had a great visit with Dr. Bit. He indicated that my blood lab-work was back to normal. Praise God! But that didn't change any of the current plan.
He explained that I would need to finish the infusions as well and be slowly tapered off of the steroids to prevent a quick reoccurrence of the leukemia.
So the journey continues... with blessings.
2nd Infusion: 9:30 AM - 2:00 PM
The pre-drugs weren't as bad this time around. Apparently I'm getting acclimated to the drugs. The chemical chemo affected my shaking hands right away (making it hard to type this). In spite of the chemo, I slept well tonight.
Monday, February 26, 2024
Small Blessings
White Blood Cells: 8.6 Thous/mm3
Red Blood Cells: 3.79 Million/mm3 (Low)
Weight: 295
Remember, the Dr. said I might have weight gain? Weighed this morning before breakfast and found I’ve lost 6 or 7 pounds in the past 6 days.
Apparently, my body has turned on hyperdrive in an effort to fight the chemo running around my system and I’m burning calories without trying.
I’ve also been on a protein diet for the past 6 months and had already lost about 30 pounds. It may have been a mistake to ask the Lord why
He didn’t make weight loss easier. It’s a good thing I’ve got plenty left.
Wasn't the easiest night for sleeping (probably just over-thinking the next infusion, but I think I got enough sleep.
Sunday, February 25, 2024 Back to Top
Played keyboard and sang with the worship team today for rehearsal and then the service. Was a little dizzy after leaving the keyboard, but that passed quickly.
Napped when I got home.
Saturday, February 24, 2024
Not much change going into the weekend. I tried my hand at a couple of activities today, swapping out a flat screen in our son’s room and moving
the older unit to the head of a treadmill where I hope to start re-establishing my stamina. Each part had me dripping in sweat after 10 minutes and the
screens only weighed 10-12 pounds… but it got done.
Thursday, February 22, 2024
Add itchy hands to the mix. Finding my pace which is minimal physical activity and maximum mental activity (computer programming) for about 4 hours.
Then I need a nap. Got a good night’s sleep.
Wednesday, February 21, 2024
Today pretty much the same with shakes, fatigue, and sensitivity to hot/cold. Still not sleeping well.
Tuesday, February 20, 2024
1st Infusion: 8:30 AM - 2:30 PM
Weight: 303 lbs
Didn’t know what to expect, so everything was new. The staff here are very kind, capable, and informative. I got my IV put in expertly (no pain).
Then came the pre-drugs. These are given to try to mitigate the effects of the chemo. I’ve never had a liquid in my veins burn like that before,
but I was warned. Even so, I was surprised. And that was just the pre-drugs.
When the chemo started, there was less of an issue with pain but something in it made me keep rubbing my arm for the next several hours as it was administered.
I had imagined that it might be much worse. Thank you, Jesus, for easing me through it.
My wife, Debbie, and good friend, Curt, came by to visit after lunch which cheered me. I drove myself home and rested through the afternoon.
The evening was troubling when I tried to sleep. My body couldn’t decide if it was hot or cold (freezing or sweating).
I didn’t feel like I had slept well and my hands shook a lot.
Monday, February 19, 2024
White Blood Cells: 22.7 Thous/mm3 (High)
Red Blood Cells: 3.32 Million/mm3 (Low)
More lab work (every Monday for the next month).
Sunday, February 18, 2024 Back to Top
I shared my journey thus far with the worship team at church today. They responded with a powerful outpouring of prayer.
It made for a wonderful time of worship together during the service.
Saturday, February 17, 2024
The Big Reveal
This morning was our monthly Men’s Prayer Breakfast at the church (Covenant Life Church) and the Spirit has been reminding me of
verses in the Bible about being open to the body of believers so that they can pray and be a part of God’s purpose in my journey,
so I shared with them today concerning my CLL. It felt like my needs dominated the prayer time, but the prayer and encouragement
confirmed that it was what God wanted. What a peace I have felt from the Lord as He leads me through whatever is ahead.
My prayer is that He will accomplish in me growth and maturity in Jesus to the glory of the Father.
Wednesday, February 14, 2024 (Valentine’s Day) Back to Top
Stage 1
White Blood Cells: 37.5 Thous/mm3 (Critical)
Red Blood Cells: 3.21 Million/mm3 (Low)
Dr. Bit said my CLL had moved to Stage One. He also informed me that if I had waited till April to see him,
I would have ended up in emergency with a blood transfusion in March. God’s plans are the best!
I am to start a large amount of steroids with other drugs to compensate for the side-effects of the steroids.
I have been scheduled for chemical chemo for 4 consecutive Tuesdays starting February 20, 2024. I will be reassessed at that time.
I have been warned of side-effects including flu-like symptoms, temporary dementia (my wife, Debbie, says it’s already here - ha, ha), weight gain, and fatigue.
The hope is that the chemo will knock the CLL back to Stage 0 and I will be able to return to life before Leukemia.
Thursday, February 8, 2024
White Blood Cells: 42.1 Thous/mm3 (Critical)
Red Blood Cells: 3.03 Million/mm3 (Low)
My doctor could find no heart or blood pressure issues, so he sent me to have lab work done on my blood at the hospital outpatient facility.
Friday, February 9, 2024
My primary doctor called to say that I needed to call my oncologist and make an appointment very soon.
My next oncology appointment was in April, but they moved it up to March. I let the oncologist know that I had lab work in the system.
I looked at my lab results online and found that my White Blood Cell count was at “critical”.
Sunday, February 4, 2024 Back to Top
God has a Plan
While talking to someone in church today, I had an episode of fuzzy vision and hearing and a cold sweat.
Those around me said I lost color and I was a bit dizzy, but a few minutes later,
I felt fine and was able to lead in worship. It was odd enough that I made an appointment to see my primary doctor a few days later for a checkup.
October 14, 2022 Back to Top
White Blood Cells: 20.4 Thous/mm3 (High)
Red Blood Cells: 4.76 Million/mm3
In preparation to have both my knees replaced, my surgeon found evidence of Chronic Lymphocytic Leukemia in my blood work.
I was informed that it was so early in the diagnosis that I was likely to have no symptoms as yet,
but I was to be put under the care on an oncologist to be on hand if there were any changes. My knee surgeries went ahead with no problems.
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