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.

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.

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!

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.

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.

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.

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."

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..."

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."

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.

Saturday, Sept 14

There's a lot of discussion about changing the name of the pro football team in Washington D.C.  Yesterday I had my own Redskins controversy.  One of the three main symptoms of transplant rejection is having one's skin to turn red.  My forehead sure reacted to something and turned red.  Mark and Chris came over for pizza (and to deliver Sherry some organic berries for her smoothies).  I began feeling poorly and called the clinic and spoke with Dr Anderson, oncologist on call.  He didn't think it sounded serious and told me to take Benadryl.  It's possible I missed a drug dose.  My phone alarm sounded.  I think I took my pills, but found them still in the Friday evening section.  Maybe I took a different day, or just got up and went to the bathroom.  I might have had some kind allergic reaction to something.  It bothered me (itched) far too much to get much sleep so I moved to a guest room to allow my darling wife to get her rest.  Sherry suggested applying Calamine lotion.  So for several hours today I looked like I was getting a facial.  It still itches, but has calmed down.  The facial part didn't seem to work very well...I still look like an old, tired looking bald guy.

P.S.  My weight I erased 6.4 pounds today.  It appears my body is still trying to balance fluids.

Friday, Sept 12

All's well.  I do; however, feel week and increasingly winded.  I'm fine sitting or moving.  I have trouble during the transition.  Several times a day I stand up and feel really faint and dizzy and have to grab hold of counter and let the 3-5 second spell pass.  The doc's office called and said I needed some kind of 4-hour blood product infusion Monday.  So I'll arrive at 8:30 and probably won't get out till 2:00 (provided my lab work doesn't show I need something else).  I'm down another 2 pounds today to 168, which I haven't seen since probably the 9th grade.

I'm concerned about my darling wife.  Sherry's been doing so much running around with me in hospital and doing all the Wal Mart trips, that she has become a little weaker.  A little weaker is a problem when you have MS.

Hope to get out off house arrest and see you guys soon.

Thursday, Sept 11, 2014: 15 BM is HVGD

I went to the clinic this morning for labs.  My blood numbers looked good.  My platelets grew to 80,000; however, my red and white cells are dragging, which is not unusual at this point.  I feel great, but sometimes get very winded and dizzy.  I'm eating a lot, but my weight is down 21 pounds to 170.

There was a scare.  Forget the TMI line for a minute; there just isn't any other way to say this.  From  Sunday morning at 4:00 till Monday at 10:00 am, I had 15 bowel movements.  My doc gave me a prescription for Budesonide; however, the nurse failed to call it into my pharmacy.  Dr Patel called to check on me and to make sure I was taking the new med.  She was surprised I didn't have it and got the prescription quickly sent to the pharmacy around 7:00 pm.  I then received an email directing me to take it ASAP.  The following morning there was another email telling me to notify the clinic if things got worse.  Finally, Dr Patel called again to see how I was doing.  I knew something was up.  It turns out bowel issues are a serious sign of transplant rejection and she was on verge of admitting back into the hospital.  This tale (seems like the proper word to use) has a happy ending.  The new drug calmed everything down.  I'm normal again, my doc is happy, and I remain at home with my darling wife.

As noted previously, I'm only the third person in medical history to have lymphoma transform into leukemia, which left me with two incurable diseases.  The two previous patients died before transplant.  The doc who saw me this morning came into my little room and announced, "So, your the famous patient."  Live or die, my case will get written up in some medical journal, so I'm doing all I can to make it a happy ending.  I'm sure the article will address blood numbers, chemo and the transplant.  However, it can't possibly measure the importance of faith, great friends, family, prayer, or a sense of humor.  Thanks for your support through this process.  At this point, everything is about as good as possible...much better than anyone expected back in May.

Tuesday, Sept 9: Tom Mitchell

I had blood drawn and lab work at yesterday's clinic visit.  Then Dr Patel came in and declared she was shocked at my numbers, "Everything looks perfect."  I was told when I left the hospital I would need a platelets infusion Sat or Monday; however, they grew on their own to 60,000.  Not everything is right as rain.  I still have some issues in the bathroom (see, I saw the TMI line this time, but the story is funny).  My pulse also registered 154 bpm when they took vital signs.  I tend get a little winded sometimes.

"Just tell me if I can do anything."  I hear that from so many friends.  I feared I would be ill and wasted  when I got home from after the transplant, but I feel real good I don't overdue it.  Anyways, Tom Mitchell, my good friend and Mississippi developer, wanted to drive over for a visit.  Sherry was exhausted and making one more run to pick up some prescription for me.  So, I called Tom back and invited him  for supper, provided he stop and pick something up.  After we ate and told stories and few lies, I asked him to do two chores I was ordered not to do: wash our dog and pooper scoop Callie's back yard.  So everyone be warned, sometimes Sherry and I need help.

My doctor's orders are to avoid people, dust, sun, etc.  Maybe after 2-3 weeks I can go out more often.  I'm driving myself to the clinic twice a week without any problems.

The swelling in my left foot, caused by the blood clot has gone down a bit.  ;)

Saturday, Sept 5: Back Home

Good news!  My wife took me back!  I was released before 11:00 yesterday and now post blogs from my couch.  Nothing much new to say about transplant and rejection issues.  No problems.  There was some troubling news about my blot clot.  I asked the doctor when the swelling will go down.  After all, I've been Big Foot for a month.  He said it may never go down, although it's still early.  Please remember how athletic I've been.  Just last year I road my bike from ocean to ocean.  However, it would be bad form to possibly outlive two terminal cancers and then complain about being slowed down.

Nowhere in the Bible does God say he wants us to be happy.  He wants us to be joyful.  Ranan is a commonly used Hebrew for joy and it means 'to overcome'. To find joy we don't need more of God's attention; He needs more of ours.  And if there's anything I've learned from my wife's struggles with MS, being happy is a decision, not a state of mind.

My favorite Bible verse is probably unique:  Jeremiah 1:12. "I am watching over my word to perform it."  The Bible holds many promises for us.  God hasn't forgotten anything.

Thursday, Sept 4 (Day 14)

My ANC increased to 2,000 and I get released tomorrow, probably by 11:00.  I'm going to have to be real careful at home.  The doc said I must avoid hot sun.  A sun burn could lead to real rejection issues.  They will let me walk around neighborhood, provided nobody's out mowing the yard or leaf blowing.  That's because dust could lead to rejection issues.  I must take my anti-rejection drugs twice a day, on time, or I'll experience rejection issues.  I guess you get the idea.  It's funny.  I got a flu shot six months ago, but all the chemo killed my immune system.  I may have to take childhood immunizations.  Trust me, I'll try to protect my new, hard won immune system.

Wed, Sept 3 (Day 13): Took Away Pain Pump; Little Sleep

I had a bad night last night.  I went to sleep at 8:00, which means I can go four hours and still not get into the next day.  Sorry if all this math is confusing.  The point is the nights are too long, especially when I get up every hour to pee.  My urgency issues really annoy me.  I'm laying in bed questioning if I need to get up.  I look at the clock and realize it's been more than 30 minutes, so I reluctantly get up.  Suddenly, I'm in trouble and can't always get ready before the action starts.  It's just very annoying and tiring.  In preparation for my Friday release, the docs also took my pain pump away.  I wasn't using it for pain since my throat and mouth sore are much better, but the little dose of narcotic made me sleepy and took my brain off the hot, uncomfortable hospital bed.  Don't get me wrong I wasn't constantly clicking the button.  In fact the nurses thought I wasn't using it much at all, but when I had it I slept better.  This morning I asked Veronica, my favorite nurse, if she could get me a take home bag of narcotics.  She just laughed, "Yea, that's going to happen."  While I've never done drugs or smoked pot (no beer or cigarets), there's a time a place for everything.

I was grumpy all day, until my darling wife showed up...followed shortly thereafter by Katie and my good friend, Mark.  I really needed to see them all.  We had a blast talking about Katie's house hunting and Mark's daughter's wedding.  This is a wedding I'm really looking forward to attending.

So where am I at medically?  Well, I survived the original, heavy chemo, my leukemia fell from 93% of blood to 0, they found a perfect, young donor, I made it through the transplant and successfully engrafted the transplant.  This morning my ANC (white blood cell count) grew from 400 to 1,300.  Once it's above 1,000 they start preparing you to leave.  I really haven't seen much of any graft rejection.  I still have a swollen left foot from the month old blood clot.  My feet and left leg look awful from being so low on platelets.  I measured 10,000 so the hospital wouldn't release a bag till the following day.  Those little red dots joined up and essentially turned my foot red.  It's now purple and fading.  It's a complete non-issue, but looks bad, especially since the ankle is swollen. I'll get over it.  My next challenge is GVHD, graft vs. host disease.  Some people don't see problems; others have many issues.  I'll get bone marrow biopsies at days 30 and 100 which will tell a lot.  Statistics show that if one lives two years there are high odds if living 10+.  Bottom line, I've been incredibly blessed to get this far.  Back on May 28 everyone thought I was in real trouble.  God is faithful!  And, I'm not just saying that because things have gone so well for me.

Isaiah 40:28-31 Do you not know? Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary and his understanding no one can fathom it.  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."

Tuesday, Sept 2 (Day 12)

They let me go when my ANC (white blood count) get to 1,000.  Yesterday it inched up to 100; today it climbed to 400.  When it hits 500 it is considered engrafted, and when it begins to grow, it tends to jump quickly.  This means I should be released Friday.  Certainly good news.

The swelling in my left foot has gone done a bit, but it looks purple as the red dots begin to fade away.  This condition has already been address with a bag of platelets and is no longer an issue.  I'm getting maybe my 15th hemoglobin transfusion since I was admitted back on May 28th.  I haven't had any temperature spikes in the last two days.  I weighed 178 this morning.

Can't wait to get out and hopefully put all the hospital visits in the rear view mirror.  Bone marrow biopsies on day 30 and 100 will provide I sight if the lymphoma and leukemia are defeated.  I think I'm feeling better than they expected, but I will need to be patient.

Monday, Sept 1. (Day 11)

This morning the doc had some good news-- my white blood cells grew to 300.  That means I may be released on Friday, about a week earlier than expected.  But, they are still watching possible graft rejection.  Last night my temp shot up to 100.3 and then went back down by itself over the next few hours.  If it had been an infection it would not have gone down.

I think I mentioned they gave me a suction machine to address mucusitis.  Well, my spit was so thick yesterday the machine got clogged up and broke.  Oh well, it's better today.

Yesterday I had a bowl of cereal for breakfast, an apple for lunch, a chocolate Sunday from Sonic in the afternoon, and Pei Wei Pad Thai for dinner.  Actually I had five bites and couldn't handle the smell and had to quit.  My appetite is way down.  Mike, my personal trainer, used to criticize my intake.  I worked out constantly, yet maintained a rather pudgy but fit physic.  He was always telling me, "You must eat massive amounts of calories?"  Not anymore.  I weighed in at 177 this morning.  I dropped a few pounds due to another pill that caused me to pee like a race horse for an hour.

Psalms 118:1 "Give thanks to the Lord, for he is good; his love endures forever."