Thursday, November 13th
at 7:00 PM
Mulkey-Mason Funeral Home
740 S. Edmonds Lane
Lewisville, TX 75067
In lieu of flowers, the family requests contributions to Gerazim Chrisitan School in Guatemala (hisappointedtime.com).
Monday, November 10, 2014
Memorial Service Invitation
We invite you to celebrate and remember Doug's life with us this Thursday. Below are the details for the memorial service:
Monday, Nov. 10 - Doug's Passing
At 1:04 this morning, Doug passed away peacefully with his family around him. We have returned home from the hospital and are at the Ryans' house. Please check back for details about Doug's memorial service and celebration of life.
2 Timothy 4:7 - "I have fought the good fight, I have finished the race, I have kept the faith."
2 Timothy 4:7 - "I have fought the good fight, I have finished the race, I have kept the faith."
Sunday, November 9, 2014
Sunday, Nov. 9 Update
Doug was stable for most of the day and his O2 was steady in the low 90s. He wasn't as responsive today as yesterday. He only responded to a few of our questions.
We were waiting for the hospice nurse to come to see if we could take him home, but she didn't arrive until 6pm. She assessed Doug's condition and said that she didn't recommend moving him home in his current condition. She pointed out that he had a slight temperature (100.1) and some blotchy-ness and discoloration in his hands, feet and ears, which are signs that he may pass away soon - in the next few hours/day.
After she left, his heart rate increased to between 140 to 150 (previously in the 120s) and his O2 dropped to the high 80s. His breathing has been more labored since then and he is sweating slightly (because of the fever).
Our prayer is that The Lord would miraculously heal him or that he would take him home.
One of Katie's friends was sharing the news about Doug with her husband and their 5-year-old son overheard. When the husband explained that Katie's daddy may be going to see Jesus soon, his eyes lit up as he cheered, "Yay!!! That's so awesome! I wanna go!"
Luke 18:17 -"Truly, I say to you, whoever does not receive the kingdom of a God like a child shall not enter it."
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Romans 8:37 - "In all these things we are more than conquerors through him who loved us."
If you would like to help the family by providing a meal, you may sign up at the following website: https://lotsahelpinghands.com/c/722602/
We were waiting for the hospice nurse to come to see if we could take him home, but she didn't arrive until 6pm. She assessed Doug's condition and said that she didn't recommend moving him home in his current condition. She pointed out that he had a slight temperature (100.1) and some blotchy-ness and discoloration in his hands, feet and ears, which are signs that he may pass away soon - in the next few hours/day.
After she left, his heart rate increased to between 140 to 150 (previously in the 120s) and his O2 dropped to the high 80s. His breathing has been more labored since then and he is sweating slightly (because of the fever).
Our prayer is that The Lord would miraculously heal him or that he would take him home.
One of Katie's friends was sharing the news about Doug with her husband and their 5-year-old son overheard. When the husband explained that Katie's daddy may be going to see Jesus soon, his eyes lit up as he cheered, "Yay!!! That's so awesome! I wanna go!"
Luke 18:17 -"Truly, I say to you, whoever does not receive the kingdom of a God like a child shall not enter it."
###
Romans 8:37 - "In all these things we are more than conquerors through him who loved us."
If you would like to help the family by providing a meal, you may sign up at the following website: https://lotsahelpinghands.com/c/722602/
From the other day:
Saturday, November 8, 2014
Saturday, Nov 8 Update
Not a lot of news today. Doug slept well last night and his O2 stayed in the mid-to upper-80s. In the morning, it increased to the low 90s and has remained there all day.
Around 9am, Dr V and the team came in and said to continue making him comfortable. The most recent blood test showed that the leukemia blast cells were increasing exponentially in the blood. It went from hundreds to 2,000 to 6,000. His platelets are also low.
Doug is receiving a small, continuous dose of morphine, which tends to make him sleepy. However, around 10am he woke up and was responsive, nodding yes or no to certain questions: Are you comfortable? Are you in pain? Do you want some Diet Coke? The important things. He has been in and out of sleep all day.
Proverbs 3:24 - "When you lie down, you will not be afraid; when you lie down, your sleep will be sweet."
Around 9am, Dr V and the team came in and said to continue making him comfortable. The most recent blood test showed that the leukemia blast cells were increasing exponentially in the blood. It went from hundreds to 2,000 to 6,000. His platelets are also low.
Doug is receiving a small, continuous dose of morphine, which tends to make him sleepy. However, around 10am he woke up and was responsive, nodding yes or no to certain questions: Are you comfortable? Are you in pain? Do you want some Diet Coke? The important things. He has been in and out of sleep all day.
Proverbs 3:24 - "When you lie down, you will not be afraid; when you lie down, your sleep will be sweet."
Friday, Nov. 7 Update
Doug was coherent today, holding conversations and continuing to crack jokes. We started working toward going home on hospice.
Later in the afternoon he had a breathing scare. The doctor was in the room and he complained about feeling short of breath. She hooked him back up to the O2 monitoring machine and saw that his oxygenation levels were quickly dropping. It dropped to the mid 30s (90 is a preferred minimum) before the rapid response team was able to stabilize him on a BiPap machine.
The BiPap pumps air in and out of your lungs and delivers almost twice as much Oxygen than he was receiving through the nose plug. It is also the last resort before going onto a ventilator.
The BiPap mask is somewhat invasive, so he couldn't talk and was getting frustrated. We were finally able to have him communicate by writing in a journal. He said that the lack of Oxygen caused him panic and got his attention. Doctors call this "air hunger." He said he was not afraid of death, but was worried about that transition; he didn't want to experience that again. The doctors agreed and decided to give him increased pain medication and an anti-anxiety med to make him more comfortable.
Because if the episode and need for the BiPap, Doug decided that it would be less of a hassle to stay where he was in the hospital rather than going home.
The medication they gave him put him to sleep for a while. When he woke up, he took the BiPap mask off and after Respiratory came they were able to switch over to a less invasive Oxygen mask that allowed him to talk. This mask doesn't force air into his lungs and doesn't provide as much O2 as the BiPap, but he seems to be doing fine. They gave him more medication and he fell back asleep.
There were a number of people around after the nurse gave him the meds. She ensured us that he could still hear our conversation and encouraged us to talk to him and share stories. For about an hour, we had a beautiful time as we told our favorite Doug stories: conquering Pompeii with Sherry in a wheelchair, taking her to the top of every castle, Smokey the Cat, movie lines on napkins in Katie's middle school lunches, Drew and the Honey Pot, Ronald capturing Doug on film in mid-throw-up, being a Monopoly cheater, and much more.
Psalm 18:29 -"With your help I can advance against a troop; with my God I can scale a wall."
Later in the afternoon he had a breathing scare. The doctor was in the room and he complained about feeling short of breath. She hooked him back up to the O2 monitoring machine and saw that his oxygenation levels were quickly dropping. It dropped to the mid 30s (90 is a preferred minimum) before the rapid response team was able to stabilize him on a BiPap machine.
The BiPap pumps air in and out of your lungs and delivers almost twice as much Oxygen than he was receiving through the nose plug. It is also the last resort before going onto a ventilator.
The BiPap mask is somewhat invasive, so he couldn't talk and was getting frustrated. We were finally able to have him communicate by writing in a journal. He said that the lack of Oxygen caused him panic and got his attention. Doctors call this "air hunger." He said he was not afraid of death, but was worried about that transition; he didn't want to experience that again. The doctors agreed and decided to give him increased pain medication and an anti-anxiety med to make him more comfortable.
Because if the episode and need for the BiPap, Doug decided that it would be less of a hassle to stay where he was in the hospital rather than going home.
The medication they gave him put him to sleep for a while. When he woke up, he took the BiPap mask off and after Respiratory came they were able to switch over to a less invasive Oxygen mask that allowed him to talk. This mask doesn't force air into his lungs and doesn't provide as much O2 as the BiPap, but he seems to be doing fine. They gave him more medication and he fell back asleep.
There were a number of people around after the nurse gave him the meds. She ensured us that he could still hear our conversation and encouraged us to talk to him and share stories. For about an hour, we had a beautiful time as we told our favorite Doug stories: conquering Pompeii with Sherry in a wheelchair, taking her to the top of every castle, Smokey the Cat, movie lines on napkins in Katie's middle school lunches, Drew and the Honey Pot, Ronald capturing Doug on film in mid-throw-up, being a Monopoly cheater, and much more.
Psalm 18:29 -"With your help I can advance against a troop; with my God I can scale a wall."
Thursday, November 6, 2014
Thurs., Nov 6, Update
Doug's lungs are filled with quite a bit of liquid. The pneumonia is getting worse. He is being given the maximum amount of oxygen. He has decided not to go on a ventilator.
Doug's brother Don and long time friend Davy from MS flew in today. We will talk to the social worker and doctor about Doug going home under hospice. At this point, the battle is the Lord's.
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. (Psalm 23:4 ESV)
Tuesday, November 4, 2014
Tuesday, Nov 4 ~ Very Bad News
Dr. V came by with several residents and her PA. She told us, based on a blood telimit*#ry (?) test that the aggressive leukemia had returned. The biopsy isn't necessary. This is very bad news. They might have tried a second transplant if it were 6 months past the first transplant. But it isn't even 100.
The strategy right now is do a strong dose of steroids. Hopefully it will calm done the nerves, keep the leukemia at bay, and help with the pneumonia and bowel infection. The goal is to get rid of these infections. I am dying (no pun intended) for a diet coke. They said maybe tomorrow. It depends on the esophagus and how well I'm swallowing. The pain is in different parts of my body is excruciating.
M.D. Anderson in Houston is doing a clinical trial of some medicine that might help me. I am not strong enough right now to qualify. So, getting rid of the infections is important.
In a couple of days they may do another round of chemo. At this point the survival rate is about 10%.
I figure I've got around 10 days to turn this around.
I know that you can do all things; no plan of ever can be thwarted. Job 42:2
Monday, November 3, 2014
Mon, Nov 3
I moved from ICU to the 8th floor around 2 PM. I took catnaps consistently from 2 to 5 PM. Last night I battled with pain to get through the night. They would give me morphine interveniously. The morphine would break the pain to help me to sleep, but only for an hour at a time. I would struggle to sleep between the times I couldn't take it. The morphine made my thinking muddled. I had hallucinations and couldn't determine whether it was reality or not. It was very disorientiing. I thought I called my brother at 9 am but it was really 9pm.
A doctor from ICU listened to my chest. It was a lot better. The neurology doctors dragged a few new med students along when they came by to show them my rare condition. The surgerions also came by. It sounds like that the nerve biopsy may happen tomorrow They are concerned about low platelets. I will have an infusion to increase them probably tomorrow before the surgery. My platelets are now around 20,000, they want them around 40,000. I asked him about putting the feeding tube in. They said not right now because they want to get in and out quickly for the nerve biopsy. Dr. V my oncologist is waiting for the nerve biopsy. If it shows leukemia it will help her to determine what chemo drugs to use. If it is HVGD, it will help determine the steroids to use. She wants to load me up with fluids before I start the chemo. If they do the biopsy early in the day and get the results back, chemo should start tomorrow. If it's late in the day I may still get some fluids but the chemo wouldn't start till the next day.
The speech therapist came by and is my new best friend. She said that I could have ice chips 4 times a day. Chewing ice chips felt glorious, after not eating or drinking for five days. Chewing ice chips is better then…well, it's better than a new car. She also gave me exercises to do to improve my swallowing. I had two major bathroom accidents last night and today. The nurses are great.
And if your [lateral nerve on the outside of your left foot] causes you to sin, [have the surgeon] cut it out and throw it away. For it is better that you lose one of your members than that your whole body go into hell. (Matthew 5:30 ESV).
"This too shall pass", said Doug from the portable potty.
Sunday, November 2, 2014
Sunday, Nov 2- latest news from ICU
I slept ok last night...maybe 4+ hours.
The pain from left rotator cuff moved to left hip and down hamstring. I felt like it was beginning to tear, so I had nurse wrap it in AC bandage at 2:00 am. This morning was much worse, so I had ice pack put under bandage. A little while ago a doctor came and inspected it. She thought it had weakened, but had not torn. Just keep ice on it. They are also going to get me some cough medicin.
About returning to BMT 8th floor (my latest goal in life)? First, I must qualify by receiving oxygen in single digits. Yesterday, they reduced my flow rate per minute from 12 litters per minute down to 8 and were able to maintain same oxygene level of 95%. BMT wanted to see min of 92%. They turned down oxygen again and my oxygen level actually increased to 97%. So, it's beginning to look favorable to my return to 8th floor today! A very big yea! This will allow me more freedom to move around and get better than is permitted in ICU.
What about permission to drink? No such luck till at least Mon or Tuesday. Docs want to see improvement in my nerve, not just pneumonia...which has no time goal just yet.
What about permission to drink? No such luck till at least Mon or Tuesday. Docs want to see improvement in my nerve, not just pneumonia...which has no time goal just yet.
Just saw ICU doc. He listened to my lungs and thought pneumonia sounded much better and noted I was way down on oxygen. He will recommend to BMT on 8 that I return.
Surgeons may talk with oncologists today to see if they want or really need info that would justify ignoring three risk factors: my level of oxygen, blood clot and high blood pressure. Head surgeon won't return till Monday to make final call.
I will update this post throughout the day.
Surgeons may talk with oncologists today to see if they want or really need info that would justify ignoring three risk factors: my level of oxygen, blood clot and high blood pressure. Head surgeon won't return till Monday to make final call.
I will update this post throughout the day.
Saturday, November 1, 2014
Sat. Nov 1
Daily blog info:
ICU doc still hears sounds pneumonia; doesn't think they will release me back to BMT 8th floor today, which is depressing.
Question as to when on nerve biopsy? According to Paul in Neurology, decision held with pulmanatorty guys, who are afraid of pneumonia, which equals delay. Bummer!
I have requested a Physical Therapy while in ICU. I really need to get out of bed. After hitting the call button and then getting permission, it took ten minutes of unhooking tubes to allow me to walk 12 feet to toilet. I wobbled a bit, which got the nurse concerned. If they would allow me to walk 1,200 feet, with shoes on, I'd do better,
I've requested swallow test, which has been delayed because of pneumonia. I have't ate or drank anything for days...that hasn't gone through a tube. It doesn't look promising that I will eat or drink until pneumonia cures up. Bummer!
Met my new oncologist doc for month of November. They aren't starting chemo in any serious way until they see nerve biopsy, which is on hold (even with local). They all agree lots of steroids would help. I can't return to 8 because I'm taking so much oxygen. They have begun to cut the rate back the flow rate from 12 to 10 liters/minute and see if my oxygen level stays above 92%. Still no rush on doing swallow X-Ray test .
Well, who can I blame for all my problems? Doctors, Obama, the Tea Party? No. Sadly,
I am responsible for aspirating food particles into my lungs. I'm the one to blame,
Surgeon walked for a talk. She will talk to her staff and try to schedule nerve biopsy in a few days.
ICU doc still hears sounds pneumonia; doesn't think they will release me back to BMT 8th floor today, which is depressing.
Question as to when on nerve biopsy? According to Paul in Neurology, decision held with pulmanatorty guys, who are afraid of pneumonia, which equals delay. Bummer!
I have requested a Physical Therapy while in ICU. I really need to get out of bed. After hitting the call button and then getting permission, it took ten minutes of unhooking tubes to allow me to walk 12 feet to toilet. I wobbled a bit, which got the nurse concerned. If they would allow me to walk 1,200 feet, with shoes on, I'd do better,
I've requested swallow test, which has been delayed because of pneumonia. I have't ate or drank anything for days...that hasn't gone through a tube. It doesn't look promising that I will eat or drink until pneumonia cures up. Bummer!
Met my new oncologist doc for month of November. They aren't starting chemo in any serious way until they see nerve biopsy, which is on hold (even with local). They all agree lots of steroids would help. I can't return to 8 because I'm taking so much oxygen. They have begun to cut the rate back the flow rate from 12 to 10 liters/minute and see if my oxygen level stays above 92%. Still no rush on doing swallow X-Ray test .
Well, who can I blame for all my problems? Doctors, Obama, the Tea Party? No. Sadly,
I am responsible for aspirating food particles into my lungs. I'm the one to blame,
Surgeon walked for a talk. She will talk to her staff and try to schedule nerve biopsy in a few days.
Friday, October 31, 2014
Fri, Oct 31 Late Day Update
The ICU doctor said that I looked bad yesterday and that he expected me to look worse today, but he says I look much better. He says I may be released to the 8th floor and start chemo tomorrow.
The radiologists looked at the MRI and found a nerve to biopsy. It is an enlarged and highlighted nerve in my leg. The biopsy will probably be Monday. It has been delayed because of the pneumonia in my right lung.
This morning they replaced my heavy air mask with a much lighter tube in my nostrils, which is better. And sometime they will remove the feeding tube from my nostrils and put it directly in my stomach. This will not preclude me from eating or drinking on my own. I don't miss eating or drinking, but I dream about milkshakes and warm, chocolate chip cookies. They're also planning to do another swallow x-ray tomorrow.
It's odd, I fall asleep very quickly these days and sometimes I will talk out loud in my dreams, only to wake up and realize that two people are in the room trying to understand what I said.
Hopefully I will be able to make it out of the hospital by next Tuesday.
Heart Rate 113 / Blood Pressure 134/97 / Oxygen 94-100 with the tube and steady 87 without
The radiologists looked at the MRI and found a nerve to biopsy. It is an enlarged and highlighted nerve in my leg. The biopsy will probably be Monday. It has been delayed because of the pneumonia in my right lung.
This morning they replaced my heavy air mask with a much lighter tube in my nostrils, which is better. And sometime they will remove the feeding tube from my nostrils and put it directly in my stomach. This will not preclude me from eating or drinking on my own. I don't miss eating or drinking, but I dream about milkshakes and warm, chocolate chip cookies. They're also planning to do another swallow x-ray tomorrow.
It's odd, I fall asleep very quickly these days and sometimes I will talk out loud in my dreams, only to wake up and realize that two people are in the room trying to understand what I said.
Hopefully I will be able to make it out of the hospital by next Tuesday.
Heart Rate 113 / Blood Pressure 134/97 / Oxygen 94-100 with the tube and steady 87 without
Friday, Oct 31- docs still won't let me eat or drink
I just don't have much breath, so it's hard to talk. Feeling much better today. Hope to get swallow x-ray test again today. As Sherry noted yesterday, I may be moved from ICU back to 8th floor tomorrow. I'm going to lobby hard for right to at mleast drink, but may have to rely on feeding tube. It's weird, I miss estting
so much I dream about eatting. I spoke with a couple of ICU doctors about installing the more permanent feeding tube directly through tummy wall, as opposed to the one coming down my nose. Surgeries may have to wait till pneumonia is resolved.
Word is radiologist reviewed my MRI and found a nerve to cut...ahh biopsy. The info from biopsy will be used by Patel and Anderson to pick which chemo drugs to use down the road. I think they are ready to start me on something tomorrow night.
I still can't eat or drink anything. I rely totally on feeding tube.
I really like the Neurology staff. Although the ICU doc gave me a mean look and a lecture for setting off the bed alarm, for the third time.. I just think I will feel much better by Tuesday,
Thursday, October 30, 2014
Thurs. Oct 30 - More complications
I was admitted to ICU around 3:00 a.m. early this morning because of insufficient oxygen - They like to have it above 92. Mine was 88. So. I now have to wear an oxygen mask.
An X-ray of my lungs showed that there are particles in my lungs resulting from food going down the "wrong way into my windpipe." So, I now have pneumonia in my right lung. They are treating it with antibiotics. Another thing they did was to put a temporary feeding tube in. It is a tube that goes through a nostril and all the way down to the intestines. It was very painful and it took 5 tries to get it right. After each time they took an X-ray to see if the long and narrow tube ended up in the right place. Meanwhile, I was without any nutrition or pills all day. I was not allowed to have anything by mouth including ice chips or water.
The various docs, along with their students and residents, came by: pulmonary, neurology, and oncology. The pulmonary group came first. Based on an X-ray of the chest, they concluded that I have pneumonia. At this point, the Pneumonia gets priority because I can't go under anesthesia (for the nerve biopsy) with pneumonia.Neurology is still waiting on the interpretation of the MRI of the leg to determine where to do the biopsy. And oncology is waiting on the biopsy.
I've been in a lot pain today despite them doubling the morphine.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:16-18 NIV)
An X-ray of my lungs showed that there are particles in my lungs resulting from food going down the "wrong way into my windpipe." So, I now have pneumonia in my right lung. They are treating it with antibiotics. Another thing they did was to put a temporary feeding tube in. It is a tube that goes through a nostril and all the way down to the intestines. It was very painful and it took 5 tries to get it right. After each time they took an X-ray to see if the long and narrow tube ended up in the right place. Meanwhile, I was without any nutrition or pills all day. I was not allowed to have anything by mouth including ice chips or water.
The various docs, along with their students and residents, came by: pulmonary, neurology, and oncology. The pulmonary group came first. Based on an X-ray of the chest, they concluded that I have pneumonia. At this point, the Pneumonia gets priority because I can't go under anesthesia (for the nerve biopsy) with pneumonia.Neurology is still waiting on the interpretation of the MRI of the leg to determine where to do the biopsy. And oncology is waiting on the biopsy.
I've been in a lot pain today despite them doubling the morphine.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:16-18 NIV)
4:25 Oct. 30 ICU
Wow! I sure got the attention of three rapid response teams tonight. Mark, my nurse, was concerned about my oxygen level: 88 vs accepted low of 92. He spent an hour hooking me up to more accurate sensors. Then when he left I thought it would be a good idea to eat some of Pam's delicious, dense cinnamon honey bun that Mark brought for me. It was great, until it got totally stuck in my throat. I have serious problelms swallowing. Honestly, I got scared for five seconds. I ripped out the sensors on my chest and was finally about to cough some up and breathe a little. A bit more hacking opened up my wind pipe. An x-Ray showed I had inhaled a good bit of food particles into my lungs. This aspiration is very is very dangerous for me. So, I don't get to eat or drink anything without another swallow test. So, here I am in ICU.
Wednesday, October 29, 2014
Wed.October 29 - Another MRI
The doctors came in this morning and said that they needed yet another MRI. Yesterday, I was in so much pain in the MRI tube that after about 2 hours I pushed the "panic button" to get out. The doc said they need another MRI with contrast so that they can make a better decision about the nerve biopsy. So, I went back for another MRI today. Fortunately it went much better than yesterday. They upped the dosage of pain meds before the MRI and also gave me some afterwards.
I was pretty blunt with the doctor (imagine that) and said that I didn't want them to do a nerve biopsy, which could leave me with a permanent disability like drop foot, if it was only CYA for the doctors to not get sued. Dr. Anderson assured me that they would learn something from the biopsy such as what kind of chemo to use. I think the biopsy will be tomorrow.
My blood pressure has come down. It is now 132/86. My pulse is 105. my weight is down to 169.
James 1:5 NIV says: If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. Please pray that God will give the doctors wisdom.
Wed, Oct 29- New Normal?
Wow! Here's a scary thought. What if my current condition is the new normal: very little extension of left arm and hand, very weak right hand, move around like I'm 100. If that's my new reality, I have a role model to show me how to do it in my darling wife, Sherry. I don't think you guys appreciate what she puts up with or how tough she is. I just got to figure out the chronic pain and swallowing. I think I am very close to needing a food tube to get a decent diet. The tube would be a an embarrassment, but would not prevent me from eating when I could.
What about my story? You know I wanted to be that guy. The guy that was cured from two 'incurable' cancers. It looked like I was on my path to a cure three weeks ago, but it now sounds like I will have 1-2 years. Please understand that I am not waiving a white flag. I just have to accept my physical condition. I also accept God doesn't care if my leukemia came back. God isn't the house at Vegas. He doesn't survive by controlling the odds. He can do anything he wants.
What about my story? You know I wanted to be that guy. The guy that was cured from two 'incurable' cancers. It looked like I was on my path to a cure three weeks ago, but it now sounds like I will have 1-2 years. Please understand that I am not waiving a white flag. I just have to accept my physical condition. I also accept God doesn't care if my leukemia came back. God isn't the house at Vegas. He doesn't survive by controlling the odds. He can do anything he wants.
Tuesday, October 28, 2014
Tuesday, Oct 28-
I spent the last hour writing a blog that didn't get saved. Bummer!
My day started out well. They adjusted my pain meds so I slept better. Apparrently all the doctors , the oncologist, neurologist, and radiologist met and they decided that they wanted to find a nerve to biopsy. So they sent me to the MRI to get it back and leg image. I knew it would be painful to be in the machine for two and half hours so I took two pain pills and morphine shot before I went in to the MRI. Being still and locked into the MRI machine is just a very unpleasant experience. Plus, today I got the hot, loud machine and I came out drenched in sweat. During the second session my pain got worse, my hands became paralyzed and I had trouble hitting the panic button. I would like to say it felt better to raise my arms and stretch but it really didn't. I also get dark bruises from trying to be so still. I agreed to go back into the machine for the last half hour. I just couldn't take it so I quit the session. It felt like dopping out of the hundred miler. However, I think it was the right thing to do.
Since getting back to my room, I took two Norco pain pills and three morphine injections. The pain is just beginning to ease, although it's becoming hard to think strait.
So where do we go from here? Hopefully, the doctors have enough MRI images to find a nerve to biopsy. The doctors are convinced leukemia has returned and is hiding in my nerves. They just want the evidence before they give me more chemo. However, if they don't find a nerve with leukemia, they plan to give me chemo anyways, probably tomorrow night. I expect to in the hospital for several days.
Three weeks ago everything was going great and I was on a path to a cure, now it looks like the cancer is back. It's just a sad, painful situation. God doesn't need the odds to be in his favor; however, it's closel too
Ii got to sleep now.
Monday, October 27, 2014
Monday, Oct 27- My Condition is Just So a Rare
Pain, pain, pain is just what I'm dealing with right now. I had another lousy night sleep, which means I was up till about 330 in the morning. This morning I talked to the oncologist and I neurologist about adjusting my pain meds. I now have two morphine pills, one of which is time released. I am also still having trouble with swallowing and choking and coughing.
I just met with Dr. Williams and his neurology staff. The preliminary reading of the MRI of my leg did not show any suspicious, inflamed, or enlarged nerves. A previous MRI of my chest showed a very suspicious nerve under my right arm. It was highlighted with intensity and enlarged; however, it was located in a position that was very high risk and no surgeon wanted to cut in that area. So what do we do? There is no nerve to biopsy. Dr. Anderson, my oncologist, and his staff just came by. The neurologist, the oncologist and the radiologist are trying to arrange a meeting this afternoon to figure out what to do. Because they all seem to agree that leukemia is in the nerve one course of action is to do blind chemotherapy. If they do that it might take place tonight in the hospital. It is odd to do chemo if you don't know what the problem is and can't measure the effectiveness of the drug. However, if they do chemo and leukemia is actually in the nerve, much of my neuropathy symptoms, such as pain, swallowing, hoarseness, and motor skills might improve.
Speaking of hoarseness and swallowing I just met with the physical therapist and reviewed the video of the x-ray of me swallowing liquids. We don't need to do anything now; however, I may need a feeding tube soon. When I swallow, I often choke and food goes down my windpipe. However, I'm currently strong enough to cough it up. A feeding tube would ensure that I got sufficient nutrients on the hospital for an extended period of time. It would not preclude me from eating food separately on the side. I can eat some foods better than others. Bread and rice, things that expand when exposed to liquid are problematic. I need to focus on the foods that I can handle and drop some of the foods that make me choke and throw up.
I'm just doing stuff right now, plus I'm very tired.
Speaking of hoarseness and swallowing I just met with the physical therapist and reviewed the video of the x-ray of me swallowing liquids. We don't need to do anything now; however, I may need a feeding tube soon. When I swallow, I often choke and food goes down my windpipe. However, I'm currently strong enough to cough it up. A feeding tube would ensure that I got sufficient nutrients on the hospital for an extended period of time. It would not preclude me from eating food separately on the side. I can eat some foods better than others. Bread and rice, things that expand when exposed to liquid are problematic. I need to focus on the foods that I can handle and drop some of the foods that make me choke and throw up.
I'm just doing stuff right now, plus I'm very tired.
Sunday, October 26, 2014
Sunday, Oct ,26
Amazing how much my physical condition has deteriorated; although I was able to walk ten 200 yard laps around the hospital wing this morning. Sherry brought me a Which Which sandwich by for lunch today, which I butchered with a swallowing attacked. Certain foods just cause me to choke, aspirate food into windpipe and have to rush to the bathroom to throw up. My terrible horse voice and trouble swallowing is just another part of my nerve damage that may soon lead to a feeding tube or pneumonia. When I started this process in May, I was very sick, but very strong; now the wheels are just coming off.
While I am in the hospital this month, I am under the care of Dr. Anderson; rather than, Dr Patel. This makes sense because he sees all the tests real time and can coordinate with the neurology department.
Trouble is I don't like him very much. It's almost painful for him to communicate with me. Today he recited a list of platitudes, received an email that was more interesting than our conversation and just walked out. Oh well...
I pushed this morning about getting the MRI of my leg completed today. I was told at 3 o'clock that it would be done tomorrow; however, one of my doctors stepped in and said that was unacceptable and started making phone calls. I received the MRI, which took two hours. This means I will get the nerve biopsy tomorrow an move the process along. I have been told the nerve biopsy may have consequences, such as a droop foot. I'm very pragmatic. I may only have a year or so to live. I already rode my bike across the country and don't need to do it again. However, we simply must know what is going on in the nerves. I should find out within a day or two if the leukemia is back. All the doctors think it is.
Speaking spiritually, I no longer have the ability to rely on my own strength.
2 Corinthians 12:19 'My grace is sufficient for you. For my power is made perfect in weakness. Therefore I will boast all the more about my weakness, so that Christ's power may rest on me.'
Galatians 3:3 'Are you so foolish? After beginning by means of the Spirit, you are now trying to finish by means of the flesh?'
Well, God has me where he wants me, dependent only on him.
Life is good!
11:30 am- took 2 pain pills 40 minutes ago. Just took sleeping pill and shot of morphine to try to knock me out.
While I am in the hospital this month, I am under the care of Dr. Anderson; rather than, Dr Patel. This makes sense because he sees all the tests real time and can coordinate with the neurology department.
Trouble is I don't like him very much. It's almost painful for him to communicate with me. Today he recited a list of platitudes, received an email that was more interesting than our conversation and just walked out. Oh well...
I pushed this morning about getting the MRI of my leg completed today. I was told at 3 o'clock that it would be done tomorrow; however, one of my doctors stepped in and said that was unacceptable and started making phone calls. I received the MRI, which took two hours. This means I will get the nerve biopsy tomorrow an move the process along. I have been told the nerve biopsy may have consequences, such as a droop foot. I'm very pragmatic. I may only have a year or so to live. I already rode my bike across the country and don't need to do it again. However, we simply must know what is going on in the nerves. I should find out within a day or two if the leukemia is back. All the doctors think it is.
Speaking spiritually, I no longer have the ability to rely on my own strength.
2 Corinthians 12:19 'My grace is sufficient for you. For my power is made perfect in weakness. Therefore I will boast all the more about my weakness, so that Christ's power may rest on me.'
Galatians 3:3 'Are you so foolish? After beginning by means of the Spirit, you are now trying to finish by means of the flesh?'
Well, God has me where he wants me, dependent only on him.
Life is good!
11:30 am- took 2 pain pills 40 minutes ago. Just took sleeping pill and shot of morphine to try to knock me out.
Saturday, October 25, 2014
10:00 Sat Night, Oct 25th
First, some medical news. I never got the MRI of my left leg; guess we'll get it tomorrow. The MRI will highlight which never will get biopsied and answer the all important question: did the cancer come back? The docs think the leukemia is hiding in the nerve and causing all my neuropathy issues. If not cancer, then maybe my pain and movement issues are caused by HVGD, which would also be pretty bad news.
I've had lots of trouble swallowing lately and had a swallowing x-ray, which showed problems. The doc was close to putting me on a feeding tube, but relented. I now have strict rules: tuck chin, multiple swallows, and must clear throat loudly to prevent food going down windpipe. Aspirating food particles could increase risk of pneumonia, which is already high. Tonight, we ate steak from Saltgrass, which was wonderful. I handled the food slowly and without incident.
My neurologist changed my medications to better reflect my nerve pain. I plan to have a restful night's sleep, which will be a blessing compared to last night's up-all-night pain fest.
I had a wonderful visit from my Nigerian friends: Arit P Eke-Ude, Teresa Agada and her son Chine. They were great and reminded me of Hezekiah, who was told by God to get his house in order; he was going to die, which is what the doctors are suggesting to me. Hezekiah turned his face to the wall and prayed, 'Remember, Lord, how I have walked before you faithfully and with wholehearted devotion done what is good in your eyes.'...Then the word of The Lord came...'I have heard your prayers and seen your tears; I will add fifteen years to your life.' Well, that's what I want: 15 more years.
Love.
I've had lots of trouble swallowing lately and had a swallowing x-ray, which showed problems. The doc was close to putting me on a feeding tube, but relented. I now have strict rules: tuck chin, multiple swallows, and must clear throat loudly to prevent food going down windpipe. Aspirating food particles could increase risk of pneumonia, which is already high. Tonight, we ate steak from Saltgrass, which was wonderful. I handled the food slowly and without incident.
My neurologist changed my medications to better reflect my nerve pain. I plan to have a restful night's sleep, which will be a blessing compared to last night's up-all-night pain fest.
I had a wonderful visit from my Nigerian friends: Arit P Eke-Ude, Teresa Agada and her son Chine. They were great and reminded me of Hezekiah, who was told by God to get his house in order; he was going to die, which is what the doctors are suggesting to me. Hezekiah turned his face to the wall and prayed, 'Remember, Lord, how I have walked before you faithfully and with wholehearted devotion done what is good in your eyes.'...Then the word of The Lord came...'I have heard your prayers and seen your tears; I will add fifteen years to your life.' Well, that's what I want: 15 more years.
Love.
Sat. Mid-day update
Dr Williams, head of Neurology Dept, and another smart woman doc just left. They tell me that Norco and morphine are the wrong drugs to treat nerve pain. Well, I concur. They are going to increase my Teppra dosage. Anything that reduces my pain level would be greatly appreciated.
I met with the speech therapist this morning analyze my swallowing. She ordered a Barium x-ray of my swallowing, which should happen today. Until then I can't eat. Sometimes when I eat and have trouble swallowing I aspirate food particles into my lungs, which increases the risk of catching pneumonia. I already have weekly x-rays of my lungs to insure I am not contracting it.
Dr Anderson just drop by to fill me in on what he knows. We are really waiting for the biopsy to give some the marching orders. There are two likely outcomes from the biopsy: 1) evidence of HVGD is found. Under this scenario, they give me lots of steroids and suppressants. 2) The biopsy finds evidence of leukemia hiding in the nerves. They then do the opposite course of action from HVGD. So the doctors need to know if it's HVGD or the return of the leukemia. Treatment should start Tuesday next week. Return of cancer is worst outcome.
I met with the speech therapist this morning analyze my swallowing. She ordered a Barium x-ray of my swallowing, which should happen today. Until then I can't eat. Sometimes when I eat and have trouble swallowing I aspirate food particles into my lungs, which increases the risk of catching pneumonia. I already have weekly x-rays of my lungs to insure I am not contracting it.
Dr Anderson just drop by to fill me in on what he knows. We are really waiting for the biopsy to give some the marching orders. There are two likely outcomes from the biopsy: 1) evidence of HVGD is found. Under this scenario, they give me lots of steroids and suppressants. 2) The biopsy finds evidence of leukemia hiding in the nerves. They then do the opposite course of action from HVGD. So the doctors need to know if it's HVGD or the return of the leukemia. Treatment should start Tuesday next week. Return of cancer is worst outcome.
Sat. morning update
I saw one of my neurologists. Some of my neuropathy is likely from very heavy chemo in hospital and could be (read likely to be) permanent, such as numbness in arms and hands. I needed that 'sledge hammer' chemo to get me this far, so there's no reason to whine about it now. The motor problems (not being able to raise left arm) are likely caused by a vascular problem, leukemia hiding in nerves, or HVGD. They will do an MRI of leg, that shows all kinds of nerve damage, to identify where to do the nerve biopsy. Because of the totally random nature of nerves being targeted, it is considered 'patchy'. They do not want to cut nerve under arm under any circumstances; there are just to many things going on there to risk it. Once they biopsy the nerve, they should know what's happening. Bad news would be a return of leukemia.
I asked about a morphine pump, but was told morphine really doesn't do anything for this kind of pain. There is room to really increase the Keppra drug dosage, which should help get me through the nights.
I went for MRI, but it turns out I needed to be on the other machine, which was busy. It will get rescheduled later today or tomorrow.
Permanent nerve damage or not, my goal is to be healed, to walk, or limp away, cancer free.
I asked about a morphine pump, but was told morphine really doesn't do anything for this kind of pain. There is room to really increase the Keppra drug dosage, which should help get me through the nights.
I went for MRI, but it turns out I needed to be on the other machine, which was busy. It will get rescheduled later today or tomorrow.
Permanent nerve damage or not, my goal is to be healed, to walk, or limp away, cancer free.
Saturday, Oct 25 @ 4:45 am
I'm afraid this thing is getting away from me. I haven't slept all night and I've taken all the pain pills, morphine, and Keppra they are allowed to give me. I 'm sipping a Diet a Coke, which tastes great. Cancer in the nerves or nerve intensity or whatever? All I know is everything hurts: neck, shoulders, back, down the arms, down left leg, more numbness in right hand, and weakness. The MRI of left leg got pushed till Saturday. This MRI, along with the other two, and the EMG should tell docs where to do the nerve biopsy. The pain started maybe three weeks ago. Much of the norothopy began Sunday afternoon, during the Cowboys game and is now getting worse. As I understand things, no one will perform the biopsy over the weekend, which is a drag. However, I got to talk to docs about adjusting the pain meds. It's just hard to fill up the time. My hands are to weak to hold the I-pad and leaning forward to read a book on the bed is hard on my back. I'd like to project an heroic effort in the face of uncertainty, but the truth is it's getting pathetic.
Once they find cancer hiding in nerve cells, I guess there is something they can do, such as chemo. I assume this would certainly upset my neat and clean path to a cure. But as we know, God doesn't need the odds on his side to make things happen. If they biopsy and find no cancer, then they got to reach another conclusion as to what set off my current problems. It could be HVGD, which is bad news and could lead to rejection of the transplant. Or not. Maybe they can devise the right mix of drugs to manage the symptoms, like they have done with my GI tract and skin rash, which faded away. Who knows? The only thing consistent with my case so far is, "It's very rare."
Answers aren't always obvious. During WWII, a cruise ship was used to ferry soilders to France and a magician was hired to entertain the troops. He did a series of illusions and tricks only to have the Captain's parrot yell out, "Squawk! It's up his sleeve!", or "Squawk, he put it behind his back!" The magacian hated the parrot. Then, a torpedo sank the ship and the magacian and the parrot found themselves in the same life boat. They stared at each other for three days. Finally, the parrot couldn't stand it anymore. "Sqauwk! I give up. Where's the ship?"
I hit the Daily Double- at 5:00 I was able to take both my Norco pain pill and the morphine at the same time. I think I am now sufficiently tired and drugged to sleep.
I slept till 8:00.
Weight: 172
Blood Pressure: 140/87
Once they find cancer hiding in nerve cells, I guess there is something they can do, such as chemo. I assume this would certainly upset my neat and clean path to a cure. But as we know, God doesn't need the odds on his side to make things happen. If they biopsy and find no cancer, then they got to reach another conclusion as to what set off my current problems. It could be HVGD, which is bad news and could lead to rejection of the transplant. Or not. Maybe they can devise the right mix of drugs to manage the symptoms, like they have done with my GI tract and skin rash, which faded away. Who knows? The only thing consistent with my case so far is, "It's very rare."
Answers aren't always obvious. During WWII, a cruise ship was used to ferry soilders to France and a magician was hired to entertain the troops. He did a series of illusions and tricks only to have the Captain's parrot yell out, "Squawk! It's up his sleeve!", or "Squawk, he put it behind his back!" The magacian hated the parrot. Then, a torpedo sank the ship and the magacian and the parrot found themselves in the same life boat. They stared at each other for three days. Finally, the parrot couldn't stand it anymore. "Sqauwk! I give up. Where's the ship?"
I hit the Daily Double- at 5:00 I was able to take both my Norco pain pill and the morphine at the same time. I think I am now sufficiently tired and drugged to sleep.
I slept till 8:00.
Weight: 172
Blood Pressure: 140/87
Friday, October 24, 2014
Friday Afternoon Update
I'm schedule for an MRI of my left leg tonight. They're looking for a safer place to do a nerve biopsy, apparently taking a biopsy from under my right arm is dangerous...too many nerves that do too many things are located there.
I'm playing the hospital game. As long as I'm admitted to the hospital I can get these tests done quickly. As soon as I become an out patent, it takes weeks. As a result, I'm a hostage over the weekend.
So I did the EMG and will do another MRI to identify which nerve(s) to biopsy, which will tell me if there is cancer hiding in the nerve. I'm not sure what it means if there is no cancer found in the nerve, or where we go from there.
I received a really encouraging note from a fellow Christian and cancer patient from Northern Ireland. In part he said, "...enter The Lord our Savior, who cut me free from the wreckage and continues to lift and repair my world on a daily basis." Wow! Northern Ireland is a long way from Texas, but we still worship the same God, who is very good ya'll.
P.S. Slept better; didn't use any morphine. Weight: 172; blood pressure still high: 150 over 100. Less strength in left leg;more numbness in right hand. Still struggling to swallow food.
I'm playing the hospital game. As long as I'm admitted to the hospital I can get these tests done quickly. As soon as I become an out patent, it takes weeks. As a result, I'm a hostage over the weekend.
So I did the EMG and will do another MRI to identify which nerve(s) to biopsy, which will tell me if there is cancer hiding in the nerve. I'm not sure what it means if there is no cancer found in the nerve, or where we go from there.
I received a really encouraging note from a fellow Christian and cancer patient from Northern Ireland. In part he said, "...enter The Lord our Savior, who cut me free from the wreckage and continues to lift and repair my world on a daily basis." Wow! Northern Ireland is a long way from Texas, but we still worship the same God, who is very good ya'll.
P.S. Slept better; didn't use any morphine. Weight: 172; blood pressure still high: 150 over 100. Less strength in left leg;more numbness in right hand. Still struggling to swallow food.
Friday, Oct 24- Cancer Hiding in nerve?
I waited Thursday for neurology to perform the EMG test, but they were swamped and postpone it till today. It's a diagnostic procedure to assess the health of muscles and nerves cells of control them. During a needle EMG, a needle electrode inserted directly into muscle records electrical activity of that muscle. EMG is done to find the cause of weakness, paralysis or muscle twitching. The neurologist and then perform a nerve biopsy, which is the removal of a small price of nerve for examinoation.
I just had the EMG test on all four limbs. The results are pending, but it is apparent that different nerves are being picked off randomly, which doesn't make a lot of systematic sense. The big question is what's causing my symptoms? To be honest, it sounds threatening. One guess is that it's HVGD. My liver, GI tract, and skin are all doing well, but a rejection could be expressing itself differently. My odd symptoms could also be caused by lymphoma tumor cells hiding in a nerve. This is now a leading candidate and is bad news. It would mean the cancer is back. As usual, my case is considered very rare. It could be something else. Next step is to do a nerve biopsy, based on the latest shoulder MRI, which showed an inflamed nerve. However, it's Friday and they don't do them over the weekend, so they are trying to get it done this afternoon. I just got to sit tight and wait for Neurology to finish its work and communicate with Dr Anderson, the chief oncologist on call.
It appears I have some new blog followers: the UT Southwestern Neurology Dept. Since I tend to whine a lot in my blog about ailments, it's proven a good historical record. One of the med students commented yesterday that they spend so much time with clinical analysis, they sometimes forget what patients are going through. She appreciated the transparency of my emotions. A second said I had a great attitude and that it was a pleasure to treat me. The chief of the department, Dr Williams, then winked and parroted back my prediction that they would scratch their heads and marvel how rare my condition was. Well, so far we have more questions tho answers.
So where am I? When I was admitted on May 28, I was within 24 hours of dying. My transformation from lymphoma to an aggressive leukemia certainly looked like a terminal condition. Then, suddenly, everything went right. The chemo took the leukemia to zero, a perfect bone marrow donor was found, the transplant engrafted successfully, and the docs were able to manage my Host vs. Graft Disease (HVGD) symptoms. I ended up back in the hospital because of uncontrolled neuropathy. This paralysis, tingling and uncontrolled pain indicated that the leukemia had returned. However, to everyone's surprise, the MRI, lumbar puncture (spinal tap) and bone marrow biopsy confirmed no cancer. I'm experiencing some real problems with paralysis and pain, and the cancer may have found a place to hide in a nerve. Am I still on the path to a cure? Good question.
What do I want? Well, I want it all. Mostly, I want to stay cancer free and live 10+ years. Frankly, I'm getting used to the idea of being a faith-based Christian who just beat two 'incurable' cancers. I like being vulnerable and trusting God. I used to want to run the Boston Marathon, finish 100-mile runs, or ride my bicycle from ocean to ocean. Now, I want to be that guy. You know, the one who was healed of two 'incurable' diseases. This seems like an goal, but I want to finish telling my story.
I just had the EMG test on all four limbs. The results are pending, but it is apparent that different nerves are being picked off randomly, which doesn't make a lot of systematic sense. The big question is what's causing my symptoms? To be honest, it sounds threatening. One guess is that it's HVGD. My liver, GI tract, and skin are all doing well, but a rejection could be expressing itself differently. My odd symptoms could also be caused by lymphoma tumor cells hiding in a nerve. This is now a leading candidate and is bad news. It would mean the cancer is back. As usual, my case is considered very rare. It could be something else. Next step is to do a nerve biopsy, based on the latest shoulder MRI, which showed an inflamed nerve. However, it's Friday and they don't do them over the weekend, so they are trying to get it done this afternoon. I just got to sit tight and wait for Neurology to finish its work and communicate with Dr Anderson, the chief oncologist on call.
It appears I have some new blog followers: the UT Southwestern Neurology Dept. Since I tend to whine a lot in my blog about ailments, it's proven a good historical record. One of the med students commented yesterday that they spend so much time with clinical analysis, they sometimes forget what patients are going through. She appreciated the transparency of my emotions. A second said I had a great attitude and that it was a pleasure to treat me. The chief of the department, Dr Williams, then winked and parroted back my prediction that they would scratch their heads and marvel how rare my condition was. Well, so far we have more questions tho answers.
So where am I? When I was admitted on May 28, I was within 24 hours of dying. My transformation from lymphoma to an aggressive leukemia certainly looked like a terminal condition. Then, suddenly, everything went right. The chemo took the leukemia to zero, a perfect bone marrow donor was found, the transplant engrafted successfully, and the docs were able to manage my Host vs. Graft Disease (HVGD) symptoms. I ended up back in the hospital because of uncontrolled neuropathy. This paralysis, tingling and uncontrolled pain indicated that the leukemia had returned. However, to everyone's surprise, the MRI, lumbar puncture (spinal tap) and bone marrow biopsy confirmed no cancer. I'm experiencing some real problems with paralysis and pain, and the cancer may have found a place to hide in a nerve. Am I still on the path to a cure? Good question.
What do I want? Well, I want it all. Mostly, I want to stay cancer free and live 10+ years. Frankly, I'm getting used to the idea of being a faith-based Christian who just beat two 'incurable' cancers. I like being vulnerable and trusting God. I used to want to run the Boston Marathon, finish 100-mile runs, or ride my bicycle from ocean to ocean. Now, I want to be that guy. You know, the one who was healed of two 'incurable' diseases. This seems like an goal, but I want to finish telling my story.
Thursday, October 23, 2014
Thursday, Oct. 23-Venting
At this point, I'm in pretty much constant pain. It's hard to describe. Some of it's like when one has the flu and just aches all over. Some of it is like my arms were dunked in a bucket of ice water--they're numb, but hurt at the same time. Part of it just feels all stove-up. I also have very limited range of motion with my left arm. All through the night, I log 45 minutes to an hour of sleep and grab on to the next pain pill or shot of morphine, which does very little. On top of this, I have very little strength in my hands or arms. Placing my I-pad or pillow on the bed is a strain. I can't open a Baggie to drain water from an ice bag. Standing up is an effort. Where all this stops is beginning to weigh on my mind.
On the other hand, I tend to do better during the day. Sometime, I will meet with my oncology team and hear what they have to say, although I suspect it will be what I heard yesterday--no return of cancer, no infection, let's wait to see what neurology says. Neurology will have another MRI to look at and more tests to run. In the end, they will scratch their heads and marvel how rare this is.
As you have probably concluded, the purpose of this blog is not to inspire, but to vent.
It's been more than two months since I had chemo. As a result, hair is beginning to grow on my face and ears (oh joy!), but not my scalp. My nurse brought me a razor and I shaved this morning, although I had to use two hands. If you want to be inspired, you only have to look to my darling wife, Sherry. She's been putting on make-up with two hands for years. She's suffered countless indignities and bounced back 10 minutes later with a smile and love for God. She can tell me about extreme nerve pain attacks, because she's been there, done it all, and got the t-shirt. Our inside joke is for me to tell her, "You just don't have any idea what I'm going through." As I've noted, I married up. John, who brought me an Oreo McFlurry yesterday, said there's a word for this: hypergamy--the action of marrying a person of superior class. Yep!
Weight: 175 lbs
Blood Pressure: 142/96
Pulse: 102
Attitude: Slightly Annoyed
On the other hand, I tend to do better during the day. Sometime, I will meet with my oncology team and hear what they have to say, although I suspect it will be what I heard yesterday--no return of cancer, no infection, let's wait to see what neurology says. Neurology will have another MRI to look at and more tests to run. In the end, they will scratch their heads and marvel how rare this is.
As you have probably concluded, the purpose of this blog is not to inspire, but to vent.
It's been more than two months since I had chemo. As a result, hair is beginning to grow on my face and ears (oh joy!), but not my scalp. My nurse brought me a razor and I shaved this morning, although I had to use two hands. If you want to be inspired, you only have to look to my darling wife, Sherry. She's been putting on make-up with two hands for years. She's suffered countless indignities and bounced back 10 minutes later with a smile and love for God. She can tell me about extreme nerve pain attacks, because she's been there, done it all, and got the t-shirt. Our inside joke is for me to tell her, "You just don't have any idea what I'm going through." As I've noted, I married up. John, who brought me an Oreo McFlurry yesterday, said there's a word for this: hypergamy--the action of marrying a person of superior class. Yep!
Weight: 175 lbs
Blood Pressure: 142/96
Pulse: 102
Attitude: Slightly Annoyed
Wednesday, October 22, 2014
We'd, Oct 22- Something is Wrong
Docs still sees no return of cancer and no infections are growing in their petri dishes. Yet, I had a terrible pain incident before lunch. I had just reported a 2 on the 1-10 pain scale. My nurse thought we should stay on schedule, so she included my two Norco pain pills with my morning meds. John, my friend from personal training, came by with an Oreo McFlurry (sure was glad to see him) and prayed for me. Then, boom went the dynamite. The pain in my right shoulder exploded. I called and soon received a morphine shot, which did no good at all. Luckily, the head neurologist and his team walked in to see the show. I couldn't stand the pain and came close to passing out. They put an ice bag on my neck. Then, after about ten minutes it abated and I could answer questions. The neurologist began to perform some push-up and pull-down tests with my hands, feet and arms. My body rebelled and flew into another 10-minute pain attack. It was odd to be in a world of hurt and hear seven doctors calmly discuss my case. I've never hurt this badly in my life.
Needless to say, the plans for an afternoon release from the hospital were gone. I napped for maybe three hours. The nutritionist stopped by, but I didn't want to talk diet, so she compassionately patted my arm, which immediately began hurting from my neck down to my right thumb. It was minor, but scared me.
Sometime today I'm scheduled to have an MRI of shoulders.
Tomorrow I should have several neurological tests, including an EMG. II think they put needles in nerves and turn on an electrical current. This won't tell them why, but will give insight as to where. They will then take a nerve biopsy.
Last night's blog boasted of endurance and commitment...'Show me something Mister!' Sorry, I am humbled today. I may not have cancer or a virus, but got something I don't want.
Needless to say, the plans for an afternoon release from the hospital were gone. I napped for maybe three hours. The nutritionist stopped by, but I didn't want to talk diet, so she compassionately patted my arm, which immediately began hurting from my neck down to my right thumb. It was minor, but scared me.
Sometime today I'm scheduled to have an MRI of shoulders.
Tomorrow I should have several neurological tests, including an EMG. II think they put needles in nerves and turn on an electrical current. This won't tell them why, but will give insight as to where. They will then take a nerve biopsy.
Last night's blog boasted of endurance and commitment...'Show me something Mister!' Sorry, I am humbled today. I may not have cancer or a virus, but got something I don't want.
Wednesday, Oct 22- Night Moves
I went to bed at 10:30, but was up and reading a book at 11:45 because of back pain. The charge nurse came in and informed me they had several transplant patients being admitted tomorrow and I would need to be transferred to the third floor. Would I like to go now or at 5:30 am? So, at midnight I was rolled down to my new room, where I found an air mattress only half inflated and air conditioner that didn't work right. It took 45 minutes to find a pump, which only partially worked. In the end, I switched sides. My pillow is at the foot and my feet are at the head; hard to explain, but it just works better. An hour later, the pain woke me again, but luckily just in time for a morphine shot. So, I'll write my blog and go back to bed, for the third time, at 3:30.
All that ruckus sounds ridiculous, but nothing could darken my mood tonight, I mean this morning. Seriously, two oncologists, the lead neurologist, and a physician's assistant all told me it seriously looked like the cancer had returned. Even my old nursing buddies came in to say how sorry they were about the leukemia relapse. They admit me into St Paul and rushed me through all those tests. Just as I'm beginning to get used to the idea that my path to a cure would actually lead to a cure, I have to process a really bad prognosis: I've got about a year to live. I know I've said that I will accept any outcome with joy, but I really wanted to live. Then, suddenly, Dr Anderson and his team march in and announce they don't know what's wrong with me. The only thing they know is the cancer did not come back. Maybe I have a viral infection. Maybe my symptoms will go away. Maybe. Under normal conditions, a viral infection in someone with a compromised immune system is bad news; not now. This is great news. It means I'm still on a the path. There's just another hurdle to jump.
Look at the story in Matthew 9:27 about Jesus healing two blind guys:
"As Jesus went from there, two blind men followed him, calling out, 'Have mercy on us, son of David!' When he had gone indoors, the blind men came to him, and he asked them, 'Do you believe I am able to do this?' 'Yes, Lord,' they replied. Then he touched their eyes and said, 'According to
your faith let it be done to you,' and their sight was restored."
This sounds like such a nice story, but it may have a deeper side. Another way to understand what happened is to fill in some blanks: Jesus walked by. The men began yelling at him. He heard them, but didn't stop. They followed him, but it doesn't say how far. Maybe they fell behind the crowd and stumbled a mile down the road, all the while yelling and asking where he went, which house did He go into? When they finally catch up with Jesus, he asks them, if they think he can heal them. Excuse me, but wasn't that their point in the first place? I certainly don't think Jesus was being rude or mean. He just wanted to see some effort. He wanted to see some commitment. Well, I'm willing to show some endurance for a healing and I believe Jesus can keep me on a path to a cure. I believe.
Back to sleep at 3:30.
I get awaken at 4:45 to get weighed (177.2 pounds) and have blood drawn for labs. Back to bed at 5:05.
Wake up at 7:30.
All that ruckus sounds ridiculous, but nothing could darken my mood tonight, I mean this morning. Seriously, two oncologists, the lead neurologist, and a physician's assistant all told me it seriously looked like the cancer had returned. Even my old nursing buddies came in to say how sorry they were about the leukemia relapse. They admit me into St Paul and rushed me through all those tests. Just as I'm beginning to get used to the idea that my path to a cure would actually lead to a cure, I have to process a really bad prognosis: I've got about a year to live. I know I've said that I will accept any outcome with joy, but I really wanted to live. Then, suddenly, Dr Anderson and his team march in and announce they don't know what's wrong with me. The only thing they know is the cancer did not come back. Maybe I have a viral infection. Maybe my symptoms will go away. Maybe. Under normal conditions, a viral infection in someone with a compromised immune system is bad news; not now. This is great news. It means I'm still on a the path. There's just another hurdle to jump.
Look at the story in Matthew 9:27 about Jesus healing two blind guys:
"As Jesus went from there, two blind men followed him, calling out, 'Have mercy on us, son of David!' When he had gone indoors, the blind men came to him, and he asked them, 'Do you believe I am able to do this?' 'Yes, Lord,' they replied. Then he touched their eyes and said, 'According to
your faith let it be done to you,' and their sight was restored."
This sounds like such a nice story, but it may have a deeper side. Another way to understand what happened is to fill in some blanks: Jesus walked by. The men began yelling at him. He heard them, but didn't stop. They followed him, but it doesn't say how far. Maybe they fell behind the crowd and stumbled a mile down the road, all the while yelling and asking where he went, which house did He go into? When they finally catch up with Jesus, he asks them, if they think he can heal them. Excuse me, but wasn't that their point in the first place? I certainly don't think Jesus was being rude or mean. He just wanted to see some effort. He wanted to see some commitment. Well, I'm willing to show some endurance for a healing and I believe Jesus can keep me on a path to a cure. I believe.
Back to sleep at 3:30.
I get awaken at 4:45 to get weighed (177.2 pounds) and have blood drawn for labs. Back to bed at 5:05.
Wake up at 7:30.
Tuesday, October 21, 2014
Tuesday, Oct 21- Surprisingly Good News
To quote Mark Twain, "The reports of my death were greatly exaggerated." The docs came in this morning and said they saw no evidence of a recurrence of lymphoma or leukemia. They have no idea why I am experiencing all these symptoms. Maybe it 's a viral infection. They are waiting for final results from the spinal tap, MRI and bone marrow biopsy and have sent fluids off for analysis. If I have an infection they need to find and treat it. However, whatever I got is better than the cancer coming back.
Who knows? Maybe I will stay on the path to a cure and be healed? Maybe there is a story to be told?
Early Tuesday, Oct 21- No News Yet
I finished my MRI last night at 1 o'clock and had another tough night trying to sleep. After sharp spike in pain around 3 o'clock I got a second dose of morphine and was able to sleep through the morning. So I've had the bone marrow biopsy, the spinal tap and the MRI and I'm just waiting for the doctors to tell me what is happening with the cancer.
While things were going well the past month, I kept score by measuring my success against hospital metrics such: chemo taking the leukemia to zero, finding a perfect donor, 100% donor cells, and good looking lab reports. Now, I may soon hear that the leukemia has returned. I want to clarify something. Just because I acknowledge the presence of cancer, I am not claiming it.
There's a chance my symptoms are a result of a infection. However, it really looks like the cancer has returned. Obviously, this is very bad news makes me sad. Last week, Sherry and I were making plans for the future. We plan to buy some new furniture for the living room and dining room and remodel a bedroom into a workout room and have the house painted. We planned a one week vacation to celebrate the 100-Day bone marrow biopsy good news. My brother Don is coming down this week to help do some remodeling on a house Katie and Ike just purchased. I was really looking to be a part of it, although not actually in the dust. Now I'm going to be locked up in the hospital for an extended period of time. Bottom line, I was beginning to ask myself what I wanted to do with your next 10-20 years? I was doing so well, then bam!
Before I got ill in May, Sherry and I attended Habitation services at Gateway and sat in the handicap seats next to the sound booth. During two services, Elder Jeremy and another prayer partner stepped over Sherry and her wheelchair to specifically pray for me. I had just finished riding my bicycle across the USA and looked very fit. It was pretty funny at the time. Then my cancer transformed into a very aggressive leukemia and I was in real trouble. Suddenly, I was amazed. Everything went right. I jumped every hurdle and was on my way to defeating two 'incurable' cancers. And my blog allowed me to find my voice. I was able to talk about what it meant to live a faith-base life. Anyone who is very competitive also has an ego and I certainly do. I have to confess I was looking forward to forward to being healed. I wanted to be star.
Things are different now. In May I was very sick, but in wonderful physical condition. I just muscled my way through 'sledge hammer' chemo. Now, I have no personal defenses and feel much more vulnerable. If I face more chemo again, it will hit me much harder. But God hasn't changed. He doesn't need 80% odds to heal me. Although I must face the fact that my message may be how to honor God with terminal cancer, rather than, showing off a healing. I don't know what the correct Biblical position is, but I plan to expect a miracle, but not demand one. I am thankful for all God has done for me and will accept what comes a joyful heart.
Monday, October 20, 2014
Monday, Oct 20- Real Concerns
Here's a running info line from today...
LDH increased com 221 to 331.
Blood pressure up: 169/105...could be pain related?
Platelets are down, yet steroids are up. Doesn't make sense.
Neuropathy (nerve pain) worse.
Doc can't explain problems with swallowing, nerve pain, or new inability to lift left foot or arm, etc. Doc said, "I'm really worried about this, because I can't explain it."
Weight 185. Increased steroids cause weight gain- at least 2 lbs/wk for me:
Having continued trouble sleeping- I sleep for hour, get awakened by intense pain in shoulders and arms, which subsides in 10-15 minutes. I read for 30 min-hour to get sleepy and go to bed. Then, repeat the process.
Have neurologist appointment at 11:00 today.
Clinic scrambling to schedule an MRI to try and learn more.
Doc agreed that my rash is fading & looks better. I will still get blood light treatment, which is great by me. If rash continues to go away, maybe they will reduce steroids, which may make me feel better.
Doc scheduled bone marrow biopsy tomorrow since I am Day-60. They were going to wait for Day-100, because I WAS doing so well. Now they want to see if leukemia returned,
Neurologist did exam and thinks I need to be admitted to hospital to get immediate MRI and spinal tap. Out-patient would take too long. He thinks these tests will explain why certain nerves are 'being picked off', but suspects leukemia returned. It's a bit troubling that things turned negative in just a few days. Something is up; they just don't know what.
Still trying to schedule photopheresis (blood light) appointment.
Blood pressure up: 169/105...could be pain related?
Platelets are down, yet steroids are up. Doesn't make sense.
Neuropathy (nerve pain) worse.
Doc can't explain problems with swallowing, nerve pain, or new inability to lift left foot or arm, etc. Doc said, "I'm really worried about this, because I can't explain it."
Weight 185. Increased steroids cause weight gain- at least 2 lbs/wk for me:
Having continued trouble sleeping- I sleep for hour, get awakened by intense pain in shoulders and arms, which subsides in 10-15 minutes. I read for 30 min-hour to get sleepy and go to bed. Then, repeat the process.
Have neurologist appointment at 11:00 today.
Clinic scrambling to schedule an MRI to try and learn more.
Doc agreed that my rash is fading & looks better. I will still get blood light treatment, which is great by me. If rash continues to go away, maybe they will reduce steroids, which may make me feel better.
Doc scheduled bone marrow biopsy tomorrow since I am Day-60. They were going to wait for Day-100, because I WAS doing so well. Now they want to see if leukemia returned,
Neurologist did exam and thinks I need to be admitted to hospital to get immediate MRI and spinal tap. Out-patient would take too long. He thinks these tests will explain why certain nerves are 'being picked off', but suspects leukemia returned. It's a bit troubling that things turned negative in just a few days. Something is up; they just don't know what.
Still trying to schedule photopheresis (blood light) appointment.
My cell phone battery very weak.
I got admitted to get quick MRI, spinal tapmand bone marrow biopsy. They want to see if leukemia has returned. If it has come back I'm in trouble. I will get bone marrow biopsy in few minutes. May get spinal tap (lumbar puncture) tonight. MRI probably tomorrow.
I would like to testify to path to a cure, but I might have been thrown into the bushes. I feel sad, threatened, but none of this changes anything I believe about God. God's good.
I had bone marrow biopsy and spinal tap already. Might get MRI tonight, or will do so tomorrow morning, Oncologist says this could be several things; infection, etc, but it suspiciously sounds like one of my two cancers. They need to know which, since treatment is different. I will definitely be here a few days,
I had bone marrow biopsy and spinal tap already. Might get MRI tonight, or will do so tomorrow morning, Oncologist says this could be several things; infection, etc, but it suspiciously sounds like one of my two cancers. They need to know which, since treatment is different. I will definitely be here a few days,
Sunday, October 19, 2014
Sunday, Oct 19- Devil is in the Details
I discovered some medication errors. Because of pain at night while sleeping the doctor increased my Gabapentin dosage. The nurse told me to go from 3 to 4 pills per day. The problem is my original dosage was 600 mg and the new prescription they prescribe was 300 mg. So I was taking way too much. Last week I was also told to take Nexium. I bought the over the counter bottle of pills, which is half the dosage of my prescription. Oh well, I think everything is correct now.
Last night was another hard night to try to sleep. My strategy is to sleep on my back without a pillow to minimize movement. However, after an hour I feel vivid pain, maybe a seven on a scale of 10. Oddly, this pain last for about 10 minutes and then begins to abate. I then try to read for 30 min-hour until I get very sleepy and go back to bed. After another hour or so in bed I repeat the process. Last night there was no pain in my left arm. All the pain was in my neck right shoulder blade and radiating down the right arm. This morning the pain was pretty intense and felt like I had a broken shoulder for half an hour. On the good side, Sherry and I got up at 9:00, so I ended up with probably 7 hours of actual sleep. I don't have pain problems during the day, since I'm sitting up and moving around.
I've been thinking about what to do with my life, if and when the 100-Day bone marrow biopsy shows a clean bill of health. I look at my brother Don and all the passion he possesses to help seniors have safer housing. He's retired, yet has a full-time volunteer job and is happier than he's ever been. I look at my ultra runner buddy Drew, who is 67 years old and running 100-milers in the mountains. I love endurance exercise and fully appreciate the commitment it takes to demand so much from one's body. Then, there's Tom Ekenberg, who is now a Masters world class weight lifter and wad recently inducted into the Hall of a Fame. Or, I could return to work and try bring home some big commissions and make donations to the Christian school I like in Guatemala. If all works right, I plan to return to work by the first of the year. I love Gateway Church and have thought of getting more envolved. But, I think Curly said it best when he stressed the importance of 'just one thing'. You remember Curly. He was the wise and leathery cowboy from the movie City Slickers. Fortunately, I know my 'just one thing' and she's my darling wife, Sherry. I definitely married up and can't wait to see what adventures lay ahead of us. And to those old ORU graduates out there. We all remember Oral's admonition, "She's not your woman; she's your wife."
Last night was another hard night to try to sleep. My strategy is to sleep on my back without a pillow to minimize movement. However, after an hour I feel vivid pain, maybe a seven on a scale of 10. Oddly, this pain last for about 10 minutes and then begins to abate. I then try to read for 30 min-hour until I get very sleepy and go back to bed. After another hour or so in bed I repeat the process. Last night there was no pain in my left arm. All the pain was in my neck right shoulder blade and radiating down the right arm. This morning the pain was pretty intense and felt like I had a broken shoulder for half an hour. On the good side, Sherry and I got up at 9:00, so I ended up with probably 7 hours of actual sleep. I don't have pain problems during the day, since I'm sitting up and moving around.
I've been thinking about what to do with my life, if and when the 100-Day bone marrow biopsy shows a clean bill of health. I look at my brother Don and all the passion he possesses to help seniors have safer housing. He's retired, yet has a full-time volunteer job and is happier than he's ever been. I look at my ultra runner buddy Drew, who is 67 years old and running 100-milers in the mountains. I love endurance exercise and fully appreciate the commitment it takes to demand so much from one's body. Then, there's Tom Ekenberg, who is now a Masters world class weight lifter and wad recently inducted into the Hall of a Fame. Or, I could return to work and try bring home some big commissions and make donations to the Christian school I like in Guatemala. If all works right, I plan to return to work by the first of the year. I love Gateway Church and have thought of getting more envolved. But, I think Curly said it best when he stressed the importance of 'just one thing'. You remember Curly. He was the wise and leathery cowboy from the movie City Slickers. Fortunately, I know my 'just one thing' and she's my darling wife, Sherry. I definitely married up and can't wait to see what adventures lay ahead of us. And to those old ORU graduates out there. We all remember Oral's admonition, "She's not your woman; she's your wife."
Saturday, October 18, 2014
Saturday, Oct 18: Cat naps
I was seriously sleep deprived this past week, especially getting only an hour or so each of
the last two nights. Yesterday was odd. If I was waiting in the doctor's office waiting room, all I had to do was put my chin in my palm and I was asleep. When a nurse took 20 minutes to enter my drug history, I intentionally took three cat naps. The doc had to wake me up when he came into the room. All in, I bet I took 15 two-to-five minute naps yesterday, although none while driving. I moved around a lot yesterday, as a result, my pain was much lower when I went to bed. It was also nice to know I had an actual pain pill rather than a vitamin. I was up at 3:00 for about an hour, but slept till 8:00.
The doc told me to pay attention to my esophagus. Apparently, it takes a lot of abuse from all the drugs. The past couple days I haven't been able to swallow all the food in my mouth. I sent Dr Patel an email and will wait for instructions.
The loss of strength in right hand is weird. I now have a better idea of how courageous my darling wife is. She puts up with far more issues on a daily basis and battles through with a smile. I can't turn the key in the car, turn a door handle or a lamp switch, or open some medicine bottles. I'm hopeful next week's visit with neurologist will confirm that this is reaction to drugs, which may be reduced at a later date.
If the 100-Day biopsy shows evidence of leukemia, I fear I will still feel ill and will face more rounds of sledgehammer chemo in hospital and more troubled recoveries at home. On the the other hand, if I can get better, I'd like to return to work, maybe at the first of the year. It's a blessing to have long term disability insurance from my employer. It pays a hefty percentage of my salary while I'm unable to work. Hopefully, my condition will settle down and the 100-Day bone marrow biopsy will show no leukemia. Right now I could not work. My immune system is depressed. I've had drug reactions that leave me exhausted. Some days are good and I ride three hours on the bike. Other days I'm like a zombie trying to make all my clinic visits.
I think I have a really good doctor. She's done an amazing job keeping me alive and put me on a path to a cure. If I survive long term, she will be the fist doc to have a patient cured of this kind of lymphoma to leukemia transformation. Pretty cool.
I previously mentioned my best friend from high school's son, Ryan. He's an electrical engineer and collapsed at work. They ran a battery if tests to see if he had a tumor, stroke, etc, but there was too much bleeding and swelling to learn much. The docs first told Davy and Pat he had little chance to survive and if he did, he would be seriously impaired. Well, the young man is back home with them and has only short term memory loss, which the docs say will get better. More tests are needed to determine what's wrong in his head, but it's a blessing to have him home and improving. What can you say, God's good.
the last two nights. Yesterday was odd. If I was waiting in the doctor's office waiting room, all I had to do was put my chin in my palm and I was asleep. When a nurse took 20 minutes to enter my drug history, I intentionally took three cat naps. The doc had to wake me up when he came into the room. All in, I bet I took 15 two-to-five minute naps yesterday, although none while driving. I moved around a lot yesterday, as a result, my pain was much lower when I went to bed. It was also nice to know I had an actual pain pill rather than a vitamin. I was up at 3:00 for about an hour, but slept till 8:00.
The doc told me to pay attention to my esophagus. Apparently, it takes a lot of abuse from all the drugs. The past couple days I haven't been able to swallow all the food in my mouth. I sent Dr Patel an email and will wait for instructions.
The loss of strength in right hand is weird. I now have a better idea of how courageous my darling wife is. She puts up with far more issues on a daily basis and battles through with a smile. I can't turn the key in the car, turn a door handle or a lamp switch, or open some medicine bottles. I'm hopeful next week's visit with neurologist will confirm that this is reaction to drugs, which may be reduced at a later date.
If the 100-Day biopsy shows evidence of leukemia, I fear I will still feel ill and will face more rounds of sledgehammer chemo in hospital and more troubled recoveries at home. On the the other hand, if I can get better, I'd like to return to work, maybe at the first of the year. It's a blessing to have long term disability insurance from my employer. It pays a hefty percentage of my salary while I'm unable to work. Hopefully, my condition will settle down and the 100-Day bone marrow biopsy will show no leukemia. Right now I could not work. My immune system is depressed. I've had drug reactions that leave me exhausted. Some days are good and I ride three hours on the bike. Other days I'm like a zombie trying to make all my clinic visits.
I think I have a really good doctor. She's done an amazing job keeping me alive and put me on a path to a cure. If I survive long term, she will be the fist doc to have a patient cured of this kind of lymphoma to leukemia transformation. Pretty cool.
I previously mentioned my best friend from high school's son, Ryan. He's an electrical engineer and collapsed at work. They ran a battery if tests to see if he had a tumor, stroke, etc, but there was too much bleeding and swelling to learn much. The docs first told Davy and Pat he had little chance to survive and if he did, he would be seriously impaired. Well, the young man is back home with them and has only short term memory loss, which the docs say will get better. More tests are needed to determine what's wrong in his head, but it's a blessing to have him home and improving. What can you say, God's good.
Friday, October 17, 2014
Friday, Oct 17. Stupid Funny
I had another long, sleepless night. The pain in my shoulders and arms just would not let up, despite taking two pain pills. At 5:00 this morning I sent a message to my doc about getting something stronger. She replied with a couple questions that be me aware that the pill I was taking for pain was actually a potassium pill. No wonder the things don't work. I'll get a proper prescription for pain meds today. In addition we now know why my potassium lab numbers looked high lately. The drugs sometimes have different names in the labels and I got confused. What a relief.
Someone asked about the recent photo of my pills. Actually, that wasn't all of them. I also apply two steroid creams and have injection needles for my blood thinner. My actual daily med count is a bit misleading, since I take 4 of this pill twice daily and 3 of the that pill three times a day. All in, I take 43 meds each day (pills, cream, and shots). This doesn't count infusions and breath inhalers I receive at the clinic. So, you can see how easy it is to trip up on a drug now and again.
I'll get an MRI and see the neurologist Monday to make sure there aren't bad things happening with tumors on spine and/or leukemia relapsed into brain. The docs strongly feel my neuropathy (pain, numbness, and loss of strength) issues are reaction to my anti-rejection drug or the heavy dose of steroids. Once the blood/light dialysis treatments begin to subdue the rash, I'll be able to back off the steroids. Yea!
Psalm 112:7. "(Doug) will have no fear of bad news; his heart is steadfast, trusting in The Lord."
Someone asked about the recent photo of my pills. Actually, that wasn't all of them. I also apply two steroid creams and have injection needles for my blood thinner. My actual daily med count is a bit misleading, since I take 4 of this pill twice daily and 3 of the that pill three times a day. All in, I take 43 meds each day (pills, cream, and shots). This doesn't count infusions and breath inhalers I receive at the clinic. So, you can see how easy it is to trip up on a drug now and again.
I'll get an MRI and see the neurologist Monday to make sure there aren't bad things happening with tumors on spine and/or leukemia relapsed into brain. The docs strongly feel my neuropathy (pain, numbness, and loss of strength) issues are reaction to my anti-rejection drug or the heavy dose of steroids. Once the blood/light dialysis treatments begin to subdue the rash, I'll be able to back off the steroids. Yea!
Psalm 112:7. "(Doug) will have no fear of bad news; his heart is steadfast, trusting in The Lord."
Thursday, October 16, 2014
Thursday, Oct 16-.challenges
Last night was awful. I've got something going on with my neck, shoulders, and both arms. If I lay down and go to sleep for an hour, I wake up with vivid pain and large patches of numbness in my arms. It's simply impossible to lay down on the bed, recliner, sofa, etc. I apply ice packs and walk around or sit at the kitchen table and read for a couple hours. Eventually the pain subsides and I find something comfortable and go back to sleep. I then sleep for about 50 minutes until the pain returns and get up and read again. I need more sleep.
The docs were concerned about the pain and loss of strength in my right hand and arm. It's odd--I can't turn off a lamp switch and must apply a second effort to turn the car key. My left foot now is weak. I failed the doc's little 'push against my hands tests'. So, they sent out an 'urgent' request for an appointment with a neurologist and an MRI, which is scheduled for Monday. The doc is concerned that the leukemia has relapsed and returned to my brain. My blood pressure is still way to high. I registered 161/106 today. This probably reflects the duress my body is under: HVGD skin rash, tons of steroids, and maybe a negative reaction to my anti-rejection drug, which I really can't quit. So they doubled my blood pressure medicine and increased my Gabapenten dosage, again. This is the drug designed to address my neuropathy (pain). I will soon start the blood light treatments. If it works (rash deminishes), then the doc will be able to reduce the steroids; I can't wait. I'm hoping this isn't leukemia coming back or some growth on my spine. The docs' think the pain is a bad drug reaction. That's what passes for good news today.
It was a long day at the clinic too. I arrived at 9:00 a.m. and left at 3:30. Bummer.
The docs were concerned about the pain and loss of strength in my right hand and arm. It's odd--I can't turn off a lamp switch and must apply a second effort to turn the car key. My left foot now is weak. I failed the doc's little 'push against my hands tests'. So, they sent out an 'urgent' request for an appointment with a neurologist and an MRI, which is scheduled for Monday. The doc is concerned that the leukemia has relapsed and returned to my brain. My blood pressure is still way to high. I registered 161/106 today. This probably reflects the duress my body is under: HVGD skin rash, tons of steroids, and maybe a negative reaction to my anti-rejection drug, which I really can't quit. So they doubled my blood pressure medicine and increased my Gabapenten dosage, again. This is the drug designed to address my neuropathy (pain). I will soon start the blood light treatments. If it works (rash deminishes), then the doc will be able to reduce the steroids; I can't wait. I'm hoping this isn't leukemia coming back or some growth on my spine. The docs' think the pain is a bad drug reaction. That's what passes for good news today.
It was a long day at the clinic too. I arrived at 9:00 a.m. and left at 3:30. Bummer.
Wednesday, October 15, 2014
Wednesday, Oct 15- Rash Looks Better
I had a sonogram of my blood clot this morning. The doc classified it as 'stable',which means it's still about 12 inches long and reaches from my groin down to behind my left knee. About 60% is totally blocked, which causes swelling. The other section of the vein has begun to flow a small amount. The strategy is to continue to give myself two Lovenix blood thinner injections each day. They will monitor it and reevaluate it in four months. This doesn't sound great, but certainly is manageable.
For the first time, I woke up and discovered my HVGD rash looked better. It's still there, but seems to have faded and just feels better. However, my typical blood pressure of 120/67, registered 158/106. They gave me Amlodupine to try to get it down, but it is still elevated. I'm sure this is related to the HVGD reaction and all the steroids I've been taken.
I thought the doc was going to remove my umbrella filter today, but this device designed to prevent the clot moving to my lungs will come out in about two weeks. I also started Pentamidine. This is an inhaled medicine that prevents pneunomia.
Weird. I haven't slept well during the past week. I was up last night from 3:00 to 4:50, due to pain issues in neck, shoulders and arms. As a result, I'm tired during the day and can just fall asleep in 30 seconds. My dreams are situational. For example, I know I am in a chair in the hospital waiting room; however, I see the setting completely different. I move my hand to pick up my cell phone from a table. I then open my eyes and see I'm still just sitting in the chair. These little hallucinations repeat every cat nap. I see the room differently. I reach to shake someone's hand. I feel an item in my hand and move to put it away. Each nap is different, but the same. I'm sure this is due to my ever increasing list and dosage of drugs and sleep deprivation. It's no big deal, but is interesting since it repearpts over and over again.
Tomorrow I go back to the clinic for labs and hope to show off my better looking rash. Transplant rejection is could a serious issue. I'm relieved it's finally improved.
I'm going to finish with a verse from one of my good friends: Matthew 19:26 "...with God all things are possible."
Tuesday, October 14, 2014
Tuesday, October 14: HVGD Rash and Pain
Dang! The rash has not responded to increased steroids. The left arm numbness and pain have materialized to my right arm, along with an annoying shoulder/neck pain and a significant loss of strength. It's weird. Simply laying on my back to sleep leads to arm/shoulder pain and there's no way to sleep on side or tummy. As a result, I slept in 50 minute intervals last night and woke up exhausted. I'm not sure if this is caused by high dose of steroids or HVGD issue. I'm supposed to get some blood light treatments, which have proven successful in managing the HVGD rash. I hope it works and that my doc will be able to back off the steroids. Doc doubled up dose of Gabapenten. If this doesn't make things better in a few days, I'll get an MRI.
Now that I'm finished complaining, I got to admit I'm still doing pretty well. I'm 100% donor cells and my lab numbers look good. They keep taking x-rays of my chest, but there's no pheunomia. Some rejection issues indicate my new donor cells are attacking the leukemia and will reduce the odds of it coming back. I'm experiencing some annoying symptoms, but can take a lot of abuse. I think this is all just part of show and I just keep ticking off days till the Day-100 bone marrow biopsy. Hopefully, it will show no leukemia present and I will be on course for a cure from two 'incurable' diseases.
Isaiah 40:29-31 "He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in The Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint,"
Monday, October 13, 2014
Monday, Oct 13: skin rash 20% worse
My HVGD skin rash has not responded to the heavy dose of steroid pills and creams. So, Dr Patel will start me on photo pheresis, which is sort like dialysis. They run my blood through a machine that exposes it to light and then gives it back to me.
I don't like taking so many steroids. My hands shake, I sleep poorly, I eat too much, and I'm losing considerable strength in right arm and hand. It's now a challenge to hold a glass of ice tea or poor milk.
My blood pressure has been elevated, probably due to rash and steroids, so I'll start taking a new pill.
I'm negative for the two virus screenings, which is good news and the balance of my labs look favorable.
I'll continue to get X-rays on Thursdays to insure I don't develop phenomia.
My blood clot filter gets removed at St Paul Hospital on Wednesday.
My Thursday clinic dance card is quickly filling up; labs, doc visit, chest X-ray, an IVIG infusion, which will take 3 hours, and some once a month administration from a breathing machine (30 minutes). Plus, they want me to fast before labs.
Things are going well, but I feel more beat up and shaky. It all comes with the process to a cure.
Psalm 27:1 "The Lord is my light and my salvation-- whom shall I fear?"
Saturday, October 11, 2014
Saturday, October 11: $918,015.80
So far my medical bills charged to United Health Care total $918,015.80 and I've been billed $3,000. Talk about blessings.
Yea! I got my first good night's sleep in five days. The HVGD skin rash quit spreading, although it sort of looks like I have the measles over my torso. It doesn't itch like the rash on my head and face last month; it sort of feels like a sunburn.
I'm taking many drugs that address transplant rejection issues. I noticed I was running out of Prednisone yesterday, so I started talking with my WalMart pharmacy. The first time it wasn't filled because the prescription needed to be transferred from another pharmacy. Then, an hour later I was told it was out of stock; however, I previously learned it was available. Two hours later I was told they forgot to re-enter the order. So, I returned at 8:00 pm and was learned the computer couldn't connect with the insurance company and I would have to come back after 1:00 today. My ski rash is considered 'acute' and I certainly don't want to have it get out of control and get put back in the hospital. So, I talked them into selling me two doses last night. I'll try to get the balance of the prescription filled today. One had to be persistant.
Psalm 59:10 "My God is one step ahead of me with His mercy."
Thursday, October 9, 2014
Thursday, Oct 9: 100% Donor Cells
My HVGD rash spread down to quads, but it's only been two days since I doubled up on steroids, so medical staff is concerned, but will just monitor it. It's a good sign that only one of three symptoms is showing up. My liver and GI tract are ok. If the rash doesn't improve, they will twice a week clean my blood by running it through a dialysis type machine. It's just important to not let the rash get out of control.
My DNA blood test came back and showed I have 100% donor cells. That's very good news. It shows that the transplant engrafted and totally wiped out my cells. That is positive for keeping the leukemia from returning.
Because of the steroid cream and doubling up on oral steroids, I'm very hungry and continue to gain weight. I'm up to 181.5 today. It's also interfering with sleep quite a bit, but it's just a hassle.
My lab numbers continue to look very good. No need for any infusions.
I continue to feel very blessed to check in each week at the clinic to 'see what condition my condition is in.' That was a quick Kenny Rogers' First Edition reference for anyone under 40.
My DNA blood test came back and showed I have 100% donor cells. That's very good news. It shows that the transplant engrafted and totally wiped out my cells. That is positive for keeping the leukemia from returning.
Because of the steroid cream and doubling up on oral steroids, I'm very hungry and continue to gain weight. I'm up to 181.5 today. It's also interfering with sleep quite a bit, but it's just a hassle.
My lab numbers continue to look very good. No need for any infusions.
I continue to feel very blessed to check in each week at the clinic to 'see what condition my condition is in.' That was a quick Kenny Rogers' First Edition reference for anyone under 40.
Psalm 112:7 "He will have no fear of bad news; his heart is steadfast, trusting in The Lord."
Tuesday, October 7, 2014
Tuesday, October 7: Acute HVGD Skin
My skin rash advanced over night. It now ranges from head to quads and generally looks worse. I told the medical staff yesterday about some chest pain and was prescribed Nexium for heartburn. This morning my left arm was sort of numb, so I fired off an email to my doctor. She replied that all this sounds like acute HVGD (host vs. graft disease) of the skin. Two weeks ago, I was taking 80 mlg/day of a steroid prescription. Because I was doing so well, it was reduced to 60 mlg. Doc Patel told me to increase back to 80 mlg and take it twice a day. 160 mlg is the standard dosage for HVGD and she told me I should start getting better after 48 hours. So, Thursday's clinic visit sounds a little more important than usual.
I was only able to sleep about three hours last night...and now my dosage of steroids is more than doubling. I'm going to skip the bike today and conserve energy. I doubt I'll sleep well tonight. Oh well, that's really just another nuisance that doesn't really matter very much in the long run.
Mark 13:35-36 "Therefore keep watch because you do not know when the owner of the owner of the house will come back--whether in the evening, or at midnight, or when the rooster crows, or at dawn. If he comes suddenly, do not let him catch you sleeping."
I was only able to sleep about three hours last night...and now my dosage of steroids is more than doubling. I'm going to skip the bike today and conserve energy. I doubt I'll sleep well tonight. Oh well, that's really just another nuisance that doesn't really matter very much in the long run.
Mark 13:35-36 "Therefore keep watch because you do not know when the owner of the owner of the house will come back--whether in the evening, or at midnight, or when the rooster crows, or at dawn. If he comes suddenly, do not let him catch you sleeping."
Monday, Oct 6
I went to the clinic and learned my lab numbers looked fine, but my donor related skin rash got worse. There was some discussion to return my steroid dosage to previous level, but Dr Patel decided to rely on steroid cream and just monitor it. I also mentioned a little chest pain that popped up 2-3 days ago. She decided I didn't need a heart scan to check for a blood clot, since I already give myself two blood thinner shots a day. She prescribed Nexium to address heartburn. So, no big concerns, but two issues to watch.
I sure wish I could sleep better. I think the steroids hinder sleep, as well as make my hands shake. There's still no word on the DNA blood test, other than, 'pending'. I rode two hours on my stationary bike this afternoon. When I was sick I sort of ate what I wanted. I've lost a lot of muscle, but have picked up belly fat. I think it's time to get serious about my diet again.
Sherry is a trooper. She battles MS everyday, but struggles to accomplish daily chores. Because her hands and limbs rebel, simple things like putting on make-up or fixing dinner turn into long productions. As always, she faces these indignities with a smile and courage. I married up.
Psalm 18:31-32 ERV "There is no God except the Lord. There is no Rock except our God. God is the one who gives me strength. He clears the path I need to take." A friend pointed out that this is a good verse to pray: 'God give us strength and clear our path.'
I sure wish I could sleep better. I think the steroids hinder sleep, as well as make my hands shake. There's still no word on the DNA blood test, other than, 'pending'. I rode two hours on my stationary bike this afternoon. When I was sick I sort of ate what I wanted. I've lost a lot of muscle, but have picked up belly fat. I think it's time to get serious about my diet again.
Sherry is a trooper. She battles MS everyday, but struggles to accomplish daily chores. Because her hands and limbs rebel, simple things like putting on make-up or fixing dinner turn into long productions. As always, she faces these indignities with a smile and courage. I married up.
Psalm 18:31-32 ERV "There is no God except the Lord. There is no Rock except our God. God is the one who gives me strength. He clears the path I need to take." A friend pointed out that this is a good verse to pray: 'God give us strength and clear our path.'
Sunday, October 5, 2014
Sunday, Oct 5: Legs
Lab numbers continue to look promising. I'm still waiting for the DNA test that will show the percentage of donor cells in my blood. The docs want to see 100% donor cells, which would tell them the transplant wiped out my cells completely, which would greatly improve odds of holding off the leukemia and lymphoma. My weight is up to about 180 pounds, but my once muscular and ripped legs look like toothpicks. Seriously, I'm happy to trade fitness for health, if that is an option. I'm up to two hours straight on stationary bike and gradually increasing resistance. Life's good.
Before:
Now:
Monday, September 29, 2014
Monday, Sept 29: reduce drugs
I went to the clinic this morning to get my labs drawn and to see Dr Patel. My good news continues: good liver numbers, platelets, LDH, etc. She said I was 'doing great'. My rash has stabilized at a low level, only showing up on previously sun exposed skin (face, neck and shoulders). Dr Patel reduced my Prednisone, which are steroid pills designed to address my rash (skin transplant rejection symptom). This makes me happy since the steroids make my hands shake and interfere with sleep. She also cut in half my Gabapentin drug, because I'm not having as much tingling in my fingers. I'll drop it completely in two weeks. So my strategy is to stay out of the sun and around lots of people--especially sick ones.
I'll blog again Thursday or if anything comes up.
I'm going to a nap and then do my daily stationary bike ride.
God bless.
I'll blog again Thursday or if anything comes up.
I'm going to a nap and then do my daily stationary bike ride.
God bless.
Sunday, September 28, 2014
Sunday, Sept 28
Wow, the past four months have been good to me. My numbers continue to improve and my manageable transplant rejection symptoms continue to fade. Day 100 bone marrow biopsy will show if any leukemia has come back, but all looks good for now. I'll post a blog after clinic visits on Mondays and Thursdays, but I just don't see the need to keep telling everyone how well I'm doing every day.
Psalms 30:2 "O Lord my My God, I called to you for help and you healed me." Ok, that's a great verse and it may prove 100% correct. I could walk away from two incurable cancers. But trust me, I am more thankful for what God has already for me and my family. A cure would just be gravy.
Psalms 30:2 "O Lord my My God, I called to you for help and you healed me." Ok, that's a great verse and it may prove 100% correct. I could walk away from two incurable cancers. But trust me, I am more thankful for what God has already for me and my family. A cure would just be gravy.
Friday, September 26, 2014
Friday, Sept 26
I'm a dolt. In yesterday's blog, I stated that I viewed life through a 'prison' of Christianity and endurance exercise. I meant 'prism'. My good friend and faithful blog reader Randal pointed out my goof and I updated a correction. Sorry, I can't blame that error on some auto-spelling program. I'm a dolt.
Today was quiet and fun. I had a wonderful lunch at Catina Laredo with my darling wife. In case you're wondering about violating my house arrest orders, there's an escape clause. We ate by ourselves outside on the patio and in the shade.
My rash continues to fade, I feel great and rode my stationary bike for an hour.
Speaking of endurance exercise...my two good ultra buddies, Drew and Fred (both 67 years old) are running The Bear 100 Mile Endurance Run through the Wasatch Mountains in Utah right now. It's a tough race with a 36-hour cut off. Amazing!
I also would like to raise up Ryan Smith. He's the oldest son of my best friend from high school. He was found unconscious at work a week ago and has been in ICU ever since. The docs have run every test possible, but don't know why he had bleeding in brain. He's now talking. Go Ryan!
Today was quiet and fun. I had a wonderful lunch at Catina Laredo with my darling wife. In case you're wondering about violating my house arrest orders, there's an escape clause. We ate by ourselves outside on the patio and in the shade.
My rash continues to fade, I feel great and rode my stationary bike for an hour.
Speaking of endurance exercise...my two good ultra buddies, Drew and Fred (both 67 years old) are running The Bear 100 Mile Endurance Run through the Wasatch Mountains in Utah right now. It's a tough race with a 36-hour cut off. Amazing!
I also would like to raise up Ryan Smith. He's the oldest son of my best friend from high school. He was found unconscious at work a week ago and has been in ICU ever since. The docs have run every test possible, but don't know why he had bleeding in brain. He's now talking. Go Ryan!
Thursday, September 25, 2014
Thursday, Sept 25: ultra quote
Things continue to go well. My GI issues are calming down and the rash that drove me crazy two weeks ago has faded away to almost nothing. I went to the clinic and learned my blood numbers look fine. I had another chest x-Ray to confirm I don't have pneumonia. I'm not having any more mini-blackouts when I stand up too quickly and my energy is coming back. I rode my stationary bike for an hour yesterday and have taken several neighborhood walks with Sherry and Callie, our 12 year old miniature Schnauzer.
I tend to interpret life through the prism of Christianity and running, or to be more accurate now, endurance exercise. To The Edge is an interesting book written by Kirk Johnson. He's a New York Times reporter who wrote about running Badwater, a 135-mile ultra run across Death Valley in 125 degree heat. I understand the following quote isn't scripture, but to me it sounds like some passage from Hebrews translated into 'runner':
"Getting up from the side of the road at 43 miles had been an act of pure faith-- I really didn't know how my crisis would end, but I believed an answer could be found. And that faith was, in turn, what had created the answer itself. It was another paradox of the ultra marathon: By moving you figure out how to move. By believing that an untapped source of strength exists, it becomes manifest."
That's what God wants us to do: have faith and move forward.
I tend to interpret life through the prism of Christianity and running, or to be more accurate now, endurance exercise. To The Edge is an interesting book written by Kirk Johnson. He's a New York Times reporter who wrote about running Badwater, a 135-mile ultra run across Death Valley in 125 degree heat. I understand the following quote isn't scripture, but to me it sounds like some passage from Hebrews translated into 'runner':
"Getting up from the side of the road at 43 miles had been an act of pure faith-- I really didn't know how my crisis would end, but I believed an answer could be found. And that faith was, in turn, what had created the answer itself. It was another paradox of the ultra marathon: By moving you figure out how to move. By believing that an untapped source of strength exists, it becomes manifest."
That's what God wants us to do: have faith and move forward.
Monday, September 22, 2014
Monday, Sept 22
I went to the clinic today, which is actually the highlight of my week. I know I'm doing well, but like to hear it from the doc every few days. My labs look good: platelets were 125; hemoglobin was 11.3; my MCV was (whatever that is) was a bit high at 102.4. There are three symptoms for HVGD (host vs. graft disease): I got some GI issues, because I poop too often, but there is no diaherra so it's considered manageable. I have a skin rash, but it is only rated 2 on a 4 point scale. My oncologist is giving me half the standard steroid dosage, since it's only on my head and shoulders and appears to be getting better. Finally, the liver is subject to damage, but my bloodwork is fine. It's actually a good thing to have some 'manageable' HVGD issues. Apparently, it reduces the chances of the leukemia coming back.
The past few days my hands started shaking. Doc said it was probably just the steroids and not to worry. I've had lots of little red dots form on wrist, hands and forearm, but Dr Patel said it was not HVGD. They will watch it, but it looks to be related to my blood shiner shots that I inject twice a day. My LD drops each week; it's now 219. Bottom line- I'm still doing very well.
I can get out and walk around if it's not sunny. A sunburn of any degree might set off a skin rejection issue, which could land me back in hospital. I can go through drive-thrus, but still must stay away from restaurants and Wal Mart. So, house arrest continues.
The past few days my hands started shaking. Doc said it was probably just the steroids and not to worry. I've had lots of little red dots form on wrist, hands and forearm, but Dr Patel said it was not HVGD. They will watch it, but it looks to be related to my blood shiner shots that I inject twice a day. My LD drops each week; it's now 219. Bottom line- I'm still doing very well.
I can get out and walk around if it's not sunny. A sunburn of any degree might set off a skin rejection issue, which could land me back in hospital. I can go through drive-thrus, but still must stay away from restaurants and Wal Mart. So, house arrest continues.
Sunday, September 21, 2014
Sunday, Sept 21, (Day 31 after transplant). Bucket List
Today's about reflection. It's been about four months since my diagnosis and 31 days since the transplant. It seems like this process should have been terribly stressful (it probably was for Sherry), painful, and full of navel gazing about the meaning of life and death. The thing is it wasn't a process; I just lived it a day at a time. One of my favorite movies was The Bucket List, with Jack Nicholson and Morgan Freeman. It's a comedy about an odd couple of cancer patients who learn to live, love and discover the meaning of life. After I was admitted to the hospital, nobody actually told me I was going to die, but it was pretty evident. My oncologist said I probably would have died within 24 hours if I hadn't got attention and then admitted they didn't have a clue what to do and were just stalling. There were only two previous medical cases like mine, but ominously, no one ever told me what happened to them. Turns out, they both died. Sherry even asked me if there was anything on my bucket list I wanted to do. Anyways, I recorded the movie from direct TV, but had to stop watching. It's odd. I remember sailing through and having the doctors laughing at me for riding the stationary bike for an hour with a bag of chemo hanging from my IV pole. Then I see movie scenes of mad dashes to the bathroom, shaking in bed, nightmares, nausea, sleeping with ice packs, and remembered the tough times. Yet, so far my journey has been blessed. Since my doc first described a reasonable path to a cure, five events have consecutively gone my way. Obviously, I'm not out of the woods yet. Viewed in a negative light, I probably still have a 25% chance of not seeing 60. Those might seem like chilling odds, but they sound great to me.
So, what I have I learned? To be honest, I don't know that I learned much. I'm an athlete. I know that if you want to run the Boston Marathon it helps to train ahead of time (and to find a flat, fast qualifying marathon). If you're going to run a 100-miler, you better learn how to eat while you're sick. I love ultra wisdoms about pain, such as "Mind over matter. If you don't mind, it don't matter." Ultras also taught me how to pee while running, which came in handy during chemo, but that's another story. And a 3,253 mile bike ride demands that one figure out how to get comfortable being uncomfortable. It's the same thing with cancer, or any other crisis. It's just a lot easier to persevere if you prepared ahead of time. Matthew 7:25 says, "The rain came down, the streams rose, and the winds blew and beat against the house; yet it did not fall, because it had its foundation on the rock." I'm a simple person, but I know what I know. God's a good God. Romans 5:10 says, "We were God's enemies, but he made us his friends through the death of his Son. Now that we are God's friends, how much more will we be saved by Christ's life!" We say a prayer before we eat, but laugh that grace isn't the time to get right with God. Knowing who I was didn't prevent my storm, but allowed me to skip denial, anger, bargaining, depression and advance directly to acceptance. And that's a very good thing.
I also know that I have amazing friends and a big brother and wife who love me very much.
So, what I have I learned? To be honest, I don't know that I learned much. I'm an athlete. I know that if you want to run the Boston Marathon it helps to train ahead of time (and to find a flat, fast qualifying marathon). If you're going to run a 100-miler, you better learn how to eat while you're sick. I love ultra wisdoms about pain, such as "Mind over matter. If you don't mind, it don't matter." Ultras also taught me how to pee while running, which came in handy during chemo, but that's another story. And a 3,253 mile bike ride demands that one figure out how to get comfortable being uncomfortable. It's the same thing with cancer, or any other crisis. It's just a lot easier to persevere if you prepared ahead of time. Matthew 7:25 says, "The rain came down, the streams rose, and the winds blew and beat against the house; yet it did not fall, because it had its foundation on the rock." I'm a simple person, but I know what I know. God's a good God. Romans 5:10 says, "We were God's enemies, but he made us his friends through the death of his Son. Now that we are God's friends, how much more will we be saved by Christ's life!" We say a prayer before we eat, but laugh that grace isn't the time to get right with God. Knowing who I was didn't prevent my storm, but allowed me to skip denial, anger, bargaining, depression and advance directly to acceptance. And that's a very good thing.
I also know that I have amazing friends and a big brother and wife who love me very much.
Friday, September 19, 2014
Friday, Sept 19
You've probably heard the phrase, "He's just comfortable in his own skin." That sure isn't my present condition. For the most part, my rash looks better and has just modestly spread, but it sure is uncomfortable and stings. Thursday I had a good night's sleep; last night was dreadful. As a result, today was mostly a waste. I was exhausted and grumpy all day. I think I just need to be patient. Easier said than done.
Psalms 112:7. "He will have no fear of bad news; his heart is steadfast, trusting in The Lord."
Psalms 112:7. "He will have no fear of bad news; his heart is steadfast, trusting in The Lord."
Thursday, September 18, 2014
Thrursday, Sept 18
I had a successful 7 hour day at the clinic. My blood numbers are growing quickly: ANC up to 3,200; white blood count is at 5.1 (normal); my LDH, which is measure of cancer and infection had shot up to 6,650 on May 28, was back down to 229; platelets are 131 (I was getting infusions in hospital whenever they fell below 10K); finally my hemoglobin act 10.6, close to normal. I also had a chest X-ray to insure I didn't pick up pneumonia. The stated odds of a successful bone marrow transplant (defeating disease) are 60%. I was told today my odds have gone way up because my numbers are moving up so fast.
My doc isn't too concerned about my two transplant rejection symptoms. The GI problems are 90% back to normal and my rash isn't spreading. The itching is also less. As I was told before, having some issues is good, since it is consistent with body also attacking the leukemia.
My next bone marrow biopsy is Day 100. I'm on Day 28 today. Next week I will have a blood test to determine what percentage of my blood is mine and how much is my donor's. In a perfect world, my blood will be 100% donor's.
Today's infusion was IVIG, which is designed to boost my immune system. My ANC is 3,200, but I am still under house arrest for a while as my immune system recovers.
My weight came in at 175 today. My daughter thinks I look skinny. I'm trading fitness for health and will hopefully have time later to rehab the body. I'll save everybody pictures today. ;)
Psalms 103:15-17. "As for man, his days are like grass, he flourishes like a flower of the feild; the wind blows over it and it is gone, and it's place remembers it no more. But from everlasting to everlasting the Lord's love is with those who fear him..."
My doc isn't too concerned about my two transplant rejection symptoms. The GI problems are 90% back to normal and my rash isn't spreading. The itching is also less. As I was told before, having some issues is good, since it is consistent with body also attacking the leukemia.
My next bone marrow biopsy is Day 100. I'm on Day 28 today. Next week I will have a blood test to determine what percentage of my blood is mine and how much is my donor's. In a perfect world, my blood will be 100% donor's.
Today's infusion was IVIG, which is designed to boost my immune system. My ANC is 3,200, but I am still under house arrest for a while as my immune system recovers.
My weight came in at 175 today. My daughter thinks I look skinny. I'm trading fitness for health and will hopefully have time later to rehab the body. I'll save everybody pictures today. ;)
Psalms 103:15-17. "As for man, his days are like grass, he flourishes like a flower of the feild; the wind blows over it and it is gone, and it's place remembers it no more. But from everlasting to everlasting the Lord's love is with those who fear him..."
Wednesday, September 17, 2014
Wednesday, Sept 17: Anoint My Head With Oil
I had some trouble sleeping again last night. The skin rash I picked up is a bother during the day. My strategies shift between hydrocortisone cream, prescription steroid lotion, ice packs, and Calamine lotion lathered all over my face and neck. I scare myself every time I look in the mirror. At night the itching and stinging make it hard to stay asleep.
I rode my stationary bike today for an hour. That's the first time I've ridden in a couple months. It felt good. My doc said my new anti-rejection drug burns muscle mass and encouraged me to work out. I've lost 17 pounds since the leukemia was diagnosed, all of which was muscle mass. So, I'm trading fitness for a cure, but I don't want to fall to far.
I look forward to my clinic visit tomorrow to hear what the doc says about the HVGD skin rash. Last time she thought it was no big deal. My lab numbers look good, but I think it's time for my white blood cells to go up. I also get a transfusion, which may take four hours in the chair.
Psalms 23:5 "You anoint my head with oil; my cup overflows."
I rode my stationary bike today for an hour. That's the first time I've ridden in a couple months. It felt good. My doc said my new anti-rejection drug burns muscle mass and encouraged me to work out. I've lost 17 pounds since the leukemia was diagnosed, all of which was muscle mass. So, I'm trading fitness for a cure, but I don't want to fall to far.
I look forward to my clinic visit tomorrow to hear what the doc says about the HVGD skin rash. Last time she thought it was no big deal. My lab numbers look good, but I think it's time for my white blood cells to go up. I also get a transfusion, which may take four hours in the chair.
Psalms 23:5 "You anoint my head with oil; my cup overflows."
Monday, September 15, 2014
Monday, Sept 15: HVGD
After a bone marrow transplant, GVHD (Graf vs host disease) is something to take seriously. About a week ago it attacked my digestive system. The doc gave me the steroid Budesonide, which goes through the body and only affects the intestines; it's helped a lot. Now GVHD attacked a second system- my skin. Dr Patel prescribed another steroid- Prednisone. This is a powerful drug that may make me jittery and is associated with muscle breakdown. I'm sure I've lost at least 16 pounds of muscle mass since May. I was encouraged to lift some weights, which may be problematic since I'm always so tired. I was also prescribed a steroid cream, which I can't wait to get from the pharmacy. The skin on my face, neck and upper back is red and VERY irritated. I couldn't sleep last night and certainly feel in pain today. So, is this bad news? Not really. It's more expected as part of the transplant process and should be managed by the new drugs. Dr Patel reminded me that some GVHD issues is a good thing. It means the new bone marrow is likely attacking any leukemia cells in my body. It certainly puts a scare into me and forces me to respect the risk factors. I was supposed to get some infusion today, but it was delayed till Thursday due to paperwork with the insurance provider. My lab work looked good this morning. Platelets were 105,000, which means I can return to giving myself tummy shots of Lovenox for my blood clot. I'm blessed that I have a good doctor who's paying close attention to my symptoms. Bottom line- manage HVGD with drugs and stay on track for long term remission and possibly cured of two incurable cancers.
Colossians 1:10-12. "And we pray this in order that you may live a life worthy of The Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light."
My prayer- God give me patience to deal with this skin rash-- NOW!
P.S. I said something to Sherry yesterday that I haven't said in 33 years of marriage: "I don't trust you further than I can throw you." I caught her rolling towards the back door handicap ramp with her breakfast and cell phone precariously balance on a cutting board laid across her lap. I quickly took it from her and delivered it outside. Seriously, pray for her to get stronger (she's pumping iron right now at the UNT gym). She's fallen a few times in the past couple weeks.
Colossians 1:10-12. "And we pray this in order that you may live a life worthy of The Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light."
My prayer- God give me patience to deal with this skin rash-- NOW!
P.S. I said something to Sherry yesterday that I haven't said in 33 years of marriage: "I don't trust you further than I can throw you." I caught her rolling towards the back door handicap ramp with her breakfast and cell phone precariously balance on a cutting board laid across her lap. I quickly took it from her and delivered it outside. Seriously, pray for her to get stronger (she's pumping iron right now at the UNT gym). She's fallen a few times in the past couple weeks.
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