Sunday, Aug 31 (Day 10)

I'm Day 10 and still in the bottomed out phase with my blood numbers.  Yesterday they gave me a bag of hemoglobin and today I'll get an IV of platelets, which I really need.  My foot swelled considerably yesterday, but eased off last night after I slept with it elevated on a pillow.  I also have tons of petechiae.  These are small red dots that surface from bleeding capillaries under the skin.  Actually my little red dots connected into big red blotches, but any further discussion would cross the TMI line.  On the other hand the pain pump helps me sleep at night and my throat and mouth sores are doing ok.

I really seem to wind down in the evenings.  I'm about to order some anti-nausea medicine.  Oh well, I'm looking at 2-6 days before my new bone marrow begins to grow white blood cells.

Friday, August 29 (Day 8): Multitasking

Last night was tough.  I developed mucusitis and spent a great amount of time sitting up and spitting in my bucket.  It's also hard to sleep because I got up at least 10 times and dragged my IV pole to the bathroom to pee.  There was even some multi-tasking around 1:00 a.m.  I was peeing in my hand held urinal (nurses measure everything) and suddenly began throwing up.  Needless to say there was some collateral damage.  In case you're not feeling sorry for me yet, I also have two mouth sores, a bothersome one down my throat, and little energy.  My weight is down to 176; can anyone say high school?  The sad thing is that the fifteen pounds I lost since my diagnosis are all muscle.  I look forward to working again.  But, this is Day 8 and all this stuff is expected and I probably won't begin to feel better for another 3-4 days.  I just got to be patient.

The nurses are great.  I now have a sucker thing, sort of like what the dentist uses after she squirts water in your mouth.  I have a pain pump that I can self administer; I've only clicked it once today.  They also converted 90% of my pills to injections in the IV line so I don't have to swallow so much.  I also take something for nausea before I eat which calms my stomach.  So, I developed some issues and the nurses and doc come up with something to manage them.  Life's good.  

3 John verse 2:  "Beloved, I wish above all things that you be in good health and prosper, even as your soul prospers."

Thursday, Aug 28 (Day 7)

I couldn't get internet service yesterday, so there was no blog posting.

All things considered, I'm doing great today.  Seven days after transplant typically sees patients with no appetite and dealing with lots of symptoms.  I'm only dealing with a few.  In an effort to stay behind the TMI line, I'll skip the first one.  However, I can testify that Immodium is a good product.  I do have some kind of sore in my throat that hurts when I swallow, but I've had it for several days and it doesn't seem to get worse.  My appetite has returned at bit.  Yesterday, Sherry brought me Mexican food from Beuno.  Today, my wonderful daughter brought a shrimp Po Bo from Pappadeaux.  I was able to eat about 2/3 of it.  Typically one big meal a day is enough.   I feel tired today and received a bag of platelets.  I'll get up after this a walk for 30 minutes in the hall.

Romans 8:28. "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Tuesday, Aug 26 (Day 5)

Urgent peeing kept me awake again last night.  However, things got really interesting around 4:30.  I had a serious diarrhea incident and ended up taking a shower.  Since I didn't call the nurse to tape over my chest ports, I washed from the waist down, but that was where the problem was.  I then cleaned upon the floor with antiseptic wipes.  I'm one of the really healthy patients on the floor and this is a challenge.  I have no idea how the older, sicker people get by.  After the transplant I weighed 193.  This morning I registered 178, which is a little below admission weight.  Two things help me: 1) faith; 2) a sense of humor.  Plus, it turned out that ultra running was good training for dealing with cancer.

They did a urine test yesterday and think they can give me some drug to ease my symptoms.  That would definitely improve my quality of life.

I'm day 5.  Around day 5-10 patients bottom out of red and white blood cells and platelets and may develop fevers and feel lousy.  I'm still feeling good.

Prognosis?  Here's what I know.  There's a 2-5% chance I could suffer a serious transplant rejection and die.  However, my donor matched 10 out of 10 and I haven't experienced any early rejection signs, such as skin problems, so I'm going to ignore this for now.  Once my white blood cells grow back the transplant could be technically considered a success; that will take another 10-20 days.  The odds of a successful transplant are 60%. Ignore the fact I have two cancers (lymphoma and leukemia), which is a little troubling.  60% assumes both the transplanted new cells grow white blood cells and that the leukemia does not return.  At transplant, the chemo took the leukemia down to zero, but some residual cancer cells will survive.  The idea is that my new and improved immune system will kill them off.  Apparently, everyone has residual bad cells of some kind and their immune systems police the body.  Hopefully the transplant will cure both the lymphoma and leukemia.

Well I'm ready for another day at cancer camp.  Mark and Pam are stopping by to visit and I asked them to pick up some potato soup from Saltgrass.  Life is good.

Monday, Aug 25

I've had trouble sleeping.  I sleep fine; I just get up every 45 minutes to pee.  And I have urgency issues- by the time I realize I need to pee, it's a rush to get into the bathroom.  As a result, I accidentally disconnected my anti-rejection drug tubing this afternoon.  Luckily I resisted the urge to pick up the connection from the bathroom floor and plug it back in.  Since I have no immune system, it didn't seem the smart thing to do. They took a urine sample today to see if they can give me something to ease things along.  No diarrhea or throwing up today.  My appetite is way down.  Today I ate half personal quiche, a turkey sandwich, and an Einstein's bagel with cream cheese.  Right now, that seems like a lot to me.  Generally, I feel pretty good, although I don't have a lot of energy.  I walked maybe 75 minutes today, but it took three outings.

My brother, Don, is leaving tomorrow to return home. It was so nice to see him and he ran many errands to assist me.  He is being replaced by his wife, Marilena, who will stay with my darling wife. As you can tell, I have a great family.

God bless.

Sunday, Aug 24 (Day +3)

I felt better yesterday, but had too many guests to get around to posting a blog.  My brother Don came  by and we had a blast watching the Little League World Series.  My great running friend, Drew, stopped by after his Grapevine Lake training run.  He's 67 and will run The Bear 100-miler (with Fred) in about 4 weeks.  It was fun to laugh about old runs.  Once he gave me a 30 second head start a couple miles from the car.  I raced off, but could tell he was gaining on me, so I dropped my sun glasses on the trail to make him stop to pick them up.  He still won and was shocked that I would 'cheat'.  Then Katie and Ike came by and showed us pictures of their possible new house in Plano.  Fun times.  After church Sherry rolled in with potato soup from Saltgrass and we had a romantic meal together...well, as romantic as possible in a hospital.

The nurse informed me my white blood count really fell this morning, which indicates the chemo is working.  It looks like things are working as planned, although it's early.  The goal is to take my white blood count to zero.  Then, after maybe ten days I should begin to grow my own, from the donor cells.  Not to be rude, but I'm also proud to announce I had a bowl movement this morning.  Another good sign, and an improvement over what's been happening the last several days.  The only negative is my swollen left foot, which shows no sign of wanting to go down.  I'm not exhibiting any signs of skin rash, which is a sign of transplant rejection.  So, while I'm still struggling to eat, things look optimistic.

I'm now going to hobble up and down the halls for a while.

Friday, Aug 22

I somehow deleted this mornings blog.  I'll try to recreate later.

I felt lousy this morning due to lack of sleep, getting 14 pounds of fluid added to my body over two days, and then received two LASIK procedures which required me to run to toilet and pee frantically.  I add fluids and then dump fluids; it's just hard on the body.  I had a bagle, some soup and an Ensure milkshake today.

Thank you Sherry and brother Don for taking care of me today.  Don made a special trip to Luke's Locker to buy me another pair of running shorts.  Explaining what happened to my other shorts would fall under the heading of  'to much information'.  I'm sure I was annoying and grouchy today.  I'm sorry.

One would think I would be celebrating the transplant and hope for a cure; however, I've just been struggling with feeling so poorly.  I'll get a good night's sleep and try to improve my attitude tomorrow.

THURSDAY, August 21- Transplant Day

Wow!  Last night, and my last dose of the anti-rejection drug that bothered me so much, went great.  No throwing up, no chills, no fever or ice bags.  I'm a bit tired since I got up at 6:30, but feel good.  I hardly ate yesterday (some graham crackers and a energy bar), but still managed to gain over six pounds to 187.2, thanks to all the fluids they are giving me.  That means sometime in my future I'm going to be peeing a lot.

Rumor is Carter Blood won't receive bone marrow for it's processing till 5:00 pm, so I may not start transplant till 5:30 or later.  The actual transplant time is dependent on size of donated cells, but should last two hours.  Generally, there is no negative reaction at transplant.  After a week or 10 days I may feel poorly and very tired.  But, my donor is a 25-year old, who matches on 10 out of 10 factors, and is the same blood type.  So, we're optimistic.

The nurses call this the patient's 'birthday'.  A nurse will stay in room to monitor the entire transplant. They don 't want things to go bad or have me accidenly disconnect the drip line.

Thanks for all your prayers and support.  Love.

Wed morning, Ag 20

I am no longer a happy camper.  Last night was fine until 5:00 a.m.  Then I threw up once, got chills, and my fever spiked to 103.  The nurses brought in four ice packs for me to 'sleep' with.  I ended up with little sleep and a bad headache.  It's 9:00 and I'm sitting in my lazy boy chair with all the ice packs trying to get the temp below 101.  I think the high temps are reaction to Atgam, the horse serum anti-rejection drug.  I get one more dose tonight.  Well, tomorrow is transplant day.  Time to just see what happens.  I don't feel like walking two hours today.

Doc stopped by and said just one more day.  My problems due to Atgam; everything else looks good.

Tuesday, August 19

"It was the best of times; it was the worst of times."  A Tale of Two Cities.

Yesterday, started out good.  I took my 16th dose of Busulfan and the first of Cytomax without incidence.  Then, I received a test shot of Atgam, the anti-rejection drug.  I had no reaction.  So, the nurse started Atgam at a low drip rate.  There was no problem, so Alicia turned it up.  I didn't see any problem till after about two-three hours.  Sherry brought me some Dan Dan Chicken Noodle Bowl from Pei Wei.  After she left I heated it up and took two bites.  I threw up maybe six times over the next couple hours (most of which were most dry heaves).  I then got the cold shakes, which I couldn't shake for a while.  Alecia gave me some drug which called down the shakes and turned down the drip rate; however, my temperature began to rise, eventually getting ton103degrees.  So, I was given two ice packs to sleep with.  They were 1.5 feet by six inches x 6 inches and were 2-3 inches thick.  They were covered in cloth and we're not ice cold.  By midnight we gradually pushed the temp down and finally reached the end of the Atgam medicine bag.  My temp gradually feel back to 97.9 this morning.  I get to do another bag go Atgam today, but the nurses say the second session isn't usually as bad as the first.  The doc is going to be cautious and order a bunch of tests:  chest x-ray, and a round of blood tests.  I feel great this morning.  I had my breakfast and plan to start walking the halls for exercise.

So the drugs finally whipped that smug smile off my face, but I'll get 'em today.

Sunday,Au gust 17

Fun, easy day.  I finish off one chemo drug at midnight and start two others tomorrow at 6:00 am.  I don't feel any worse for the wear, but still have three more days of chemo and some anti-rejection drug.  Time will tell.

I slept great last night with the addition of the restless leg drug.  Apparently, I didn't even complain when they woke me up at 11:00 and 12:00 to take vital signs.

I had a great early afternoon.  My good running buddy, Mark, and his wife, Pam, stopped by to visit.  I also saw my good church friends, Mark and Chris.  We've known them for at least 25 years...plus they brought Chipotle.  It sure seems they do more for us lately than we do for them.  They drove Sherry to Enid, OK last year to visit me on my bike ride.  Oh well, their daughter, Renee, gets married in March.  That will be fun.  My darling wife, Sherry, also drove down for lunch; we all had a good time and she made it back in time to attend the Gateway (church) Habitation service.

All is well.

Sat, Aug 16

Officially I am day -5.   Thursday is the transplant and I start getting positive numbers.  The docs watch the first 100 days very closely.  They say they're giving me stronger doses of chemo.  All I know is I'm getting 16 IV bags of Busulfan, one every six hours before they move on to the other drugs.  I had a little upset bowl movement today, but that seems to have passed.

I read an impressive quote today:  "The strongest of all warriors are these two:  Time and Patience."  Tolstoy, War and Peace.  To be honest I was reading Damn Few, an interesting book about US Navy Seals.  Having Tolstoy's name makes it more impressive, but I don't know if it helps me very much.  I like Psalm 44:5-8:  "Through you we push back our enemies; through your name we trample our foes.  I do not trust in my bow, my sword does not bring me victory; but you give us victory over our enemies, you put our adversaries to shame.  In God we make our boast all day long, and we praise your name forever."  Fighting cancer is just different.  It helps that I'm strong and have a positive attitude.  The docs like to see me exercise every day.  Today, I walked the halls for two hours, which was all my crooked back and left leg (blood clot) would allow.  The medical odds are in my favor; however, success simply is not determined by what I can do.  There's a nice guy across the hall scheduled for a transplant the day before me.  The hard fact is one of us probably won't make it; one of us will.  Being in control of things is often an illusion.  However, the one thing I understand is that God's a good God and He's in control, no matter how this thing turns out.

Docs gave me some drug today for restless leg syndrome.  The last couple nights I went to bed early, but didn't fall asleep till 2:30-3:00.  Leg twitching?  Most of you will probably feel sorry for me, but Sherry and Drew put up with this every night and probably aren't interested I'm hearing my war stories. ;). Oh well, my darling wife brought Eat Z's for supper.  She still loves me.

Friday, Aug 15

It's been a pretty easy day.  To tell the truth, I wouldn't know I was given six chemo drugs, although I heard from a nurse that my latest lab work showed some increase in my system, so they will reduce the intensity of the next bag to protect my liver.  I've also noted that I feel really tired several days after chemo.  It's probably to soon to brag about anything.

On May 28, I weighed in at 191 pounds.  I registered 179 on Wednesday and now tip the scales at 182, probably due bags of fluids, which they turned down this afternoon.

I managed to walk an hour up and down the halls this morning.  My leg (blood clot) is feeling better every day and doesn't swell up nearly as much ad a week ago.  I haven't had any pain pills since We'd morning.

I went to bed last night at 9:00, but didn't fall asleep till around 2:00.  Annoying.  I'll try some Benadryl tonight.

Three days down; 25 to go.

Thursday, Aug 14th

I came back into the hospital yesterday morning at 8:30 a.m.  I had two procedures: 1) I had my PICC line moved from arm to chest (I receive chemo and give blood samples from this port); 2) a doc installed a filter to catch the blood clot in left leg if it decides to move toward the lungs.  My leg is beginning to swell less and feel better (no pain pills today).  I'm getting the same chemo drugs that I originally received (previously described as 'sledge hammer' chemo), but in much higher doses this time.  My oncologist said they don't normally give this protocol to patients over 50 years of age; however, I'm in very good health.  I've had chemo on and off all day and feel fine, but hear it catches up to you in five days.

I exchanged funny emails with Pat Reynolds, one of our missionary friends in Guatemala. She complimented my positive attitude and said I would do well because I was speaking life, not death, over myself.  I replied, "I will beat this disease if it kills me."  I was then rebuked for having a 'smart mouth'.

Robin Tull, my College roommate stopped by today for a visit after dropping his last daughter off at ORU in Tulsa.  We had some good laughs about practical jokes and me wearing his new jeans before he did.  Robin is a good guy and is doing a great job as our financial advisor.

Sherry brought Pei Wei Dan Dan Chicken Noodle bowl by for supper.  That sure beats hospital food. As I pointed out previously, I married up.

What's to come?  Five more days of chemo and a bone marrow transplant.  I may (probably will) get sick before I get better, but this could lead to an amazing cure, so it's all for the best.

God's a good God.

Sat, Aug 9th

Sherry picked up my brother Don and at the airport and were able to join me for the final doctor visit prior to my hospital admission on the 13th.  All my medical tests turned out good: my lung capacity was 113% of normal; heart was strong, etc.  Despite my muscle loss over the past two months, I'm apparently much stronger than typical cancer patients.  Dr Patel went over every chemo drug in detail: why it's used, risks and planned counter measures.  I've had all these drugs previously and handled them well, but now they are cranking up the doses.  The idea is not just to kill the leukemia and my white blood cells, but the body's ability to ever make any more.  I'll be totally dependent on the donor's bone marrow taking over.  The truth is that many things can go wrong during the six days of heavy chemo and the transplant; however, I will be monitored every two hours for a ton of factors.  If something goes astray, they give me a new drug to deal with fever or nasuea. The chemo sounds challenging.  It's pretty much guaranteed to make me feel ill.  So, I must go in with the attitude of maintaining an upbeat spirit and will try to greet everyone who with a smile.

The actual transplant sounds anti-climatic.  They simply give me a bag of donor cells and it drips down into my IV in about an hour.  Then, everyone watches me closes for two weeks. They are concerned about a rejection.  There are planned counter measures and alternate drugs they can administer.  Apparently, a little rejection is a good thing.  That would confirm the new stem cells are going after the leukemia.  A little rejection they can manage.  It sounds like I will become increasingly weak, a trend that may last for three months.  After my new white blood cells build my ANC (measure of immune strength) to 1,000, they let me return home.  I will make three visits per week to the cancer clinic for close monitoring.  60% of patients who get a transplant survive five years.  My Gateway home group was sonsupportive last night.  They will take turns driving me to the clinic when I'm released.

It was wonderful to see my brother, Don, over a long weekend.  He and his wife, Marilena, will take turns visiting Sherry while I'm in the hospital for four weeks.  Sherry is fiercely independent, but needs someone around in case she falls.  Speaking of falling... I fell out of her minivan several days ago.  I was grabbing bags of groceries, but my left leg did cooperate and I tripped and fell out of her handicap tailgate.  All that was lost was a jar of sauce and my man card.

How does religion help me?  First off, I don't really like religion and doubt it would provide much comfort.  Sherry and are faith-based, Christians.  This gives me a joy that comes from having a relationship with Jesus.  I haven't lost one second of sleep worrying about the lymphoma or leukemia.    I'm sure two months ago the docs thought I would not survive the year.  Sherry's been an inspiration to me.  Her MS has taken away most of her ability to move.  She's had to deal with regular challenges that would crush most people.  However, because she is more focused on what she's been given and less concerned with what has been lost.  Being happy is a choice.  The cancer really has been an amazing adventure.  I'm so blessed to have so many great friends.

For those of you who aren't Christians.... I wanted to pass along some advice.  God is not mad at you.  God loves you.  What's the most famous verse in the Bible?  Probably John 3:16. "For God so loved the world that he gave his only son, that whoever believes in him shall not perish but have eternal life."  Most people don't know the next verse, John 3:17.  "For God did not send his Son into the world to condem the world..."  That's what ticked off the Pharasies, who definitely we're mad at everyone.  God wants a relationship with you.  So that, the next time you face cancer or some other crisis, you won't be by yourself.

Aug 5, Tuesday

Sherry and I had another road trip last night to the emergency room.  My left leg is causing a lot of pain because of the blood clot.  In addition, my temp spiked to 100.4.  We called the doc and were told to come in.  Everything looked good and I was released at 1:30 am.

Sherry is just doing a super job as a care giver.  She's made many trips to Wal Mart and has done tons at home.  I definitely married up.

My bone marrow biopsy turned out to be an expedition.  After two dry holes on the left hip bone they found what they needed on the right side.  It's funny.  The doc says, 'You will hear the buzzing now;' instead of 'drilling'.  After they numb you up, it's really no big deal.

I felt ill earlier and talked the nurse into giving me a bottle of cranberry juice.  It helped, but I now must pay for my sins.  I have to wait three hours to do the PET scan.  They gave me a room and a place to lay down, so I'm a happy camper.

I'm getting closer to transplant and everything is looking good.  The blood clot and awful leg pain doesn't complicate anything.  When they give me the IV bag on the 21st, I will hopefully be born again.  Time will tell if it works, but it's been an amazing ride.  Thanks to all my friends for all the love and support.  Sherry and I feel so blessed.

Ouch!

I may want to take this blog back tomorrow.  Being sick is just a drag.  I'm glad I submitted yesterday and let Sherry drive me to the emergency room.  We didn't have a fight because I decided years ago that she's smarter than me.  This blood clot in the left leg just hurts like the dickens.  If I lay down on the sofa I can neutralize it, but it feels even worse the next time I have to get up.  I convinced myself that heading out to Barnes & Noble and getting a book would be good for me.  However, just walking into the building elevated my pulse.  Unlike the old Border's stores, B&N has no nice chairs near the books to sit down.  I limped around for five minutes, but couldn't get my mind off my leg.  So, I left.  I used to do an hour on the hospital bike.  Today's exercise was one lap around the kitchen/family room.  Then, I lay around all day and let Sherry make repeated trips to Wal Mart and do lots of chores.  A doc called to check on me today and passed along that my blood thinner shots won't really do anything to reduce the pain for maybe two weeks.  I'm still beating the odds and my tests continue to look good.  In two weeks I get really strong chemo and then pray that the bag of bone marrow works.  Bottom line- I'll feel a lot worse before I feel better.  Trouble is, I don't feel particularly good right now.

Saturday, Aug 2nd

"Life is like a box of chocolates."  Today, Sherry and I spent more than four hours at St Paul Hospital's emergency room.  I woke with a painful, swollen left leg.  Sherry made me call the doc, which turned out to be a good call.  An ultra sound showed I had a blood clot.  So, hours later, I got a blood thinner shot and got to return home.  Not exactly what was on the schedule, but we succeeded.

Friday, August 1st

I had six appointments on the schedule today , which included 2.5 hours of meetings with the social worker, insurance person and the transplant coordinator.  I also had a PET scan of heart and a lung test, which proved annoying.  Sit in an air tight phone booth and repeatedly blow into a mouthpiece until I was blue in the face, only to hear the tech say 'just three more seconds'.  It was tiring.  I don't really know that Sherry and I learned very much new info.  I get admitted Aug 13 and start chemo bright and early on 14th.  I've had all the drugs before, but nowhere near these doses.  I think the phrase was, "You'll feel like you got hit by a truck."  There's pretty much a guarantee of some throwing up and diarrhea for a couple days.  But, the hospital is the place to be.  Yea, they take blood and vitals every two hours, but the nurses are right there with drugs to help you feel better.  It also sounds like the process will take maybe four weeks: six days of chemo to kill everything, then drop the bag of bone marrow and watch what happens.  I think it is customary for everyone to get sick and feel ill.  You just hope no rejection sets in.  It also sounds like the first 30-60 days at home are very hard.  I already feel whipped, but I guess there is a lot more room to feel weak and tired.  The goal, of course, is to win...to live another 30 years and chase Sherry around the house again (which sure hasn't happened since I started getting chemo).

The ride home was interesting.  Sherry just stayed in her wheel chair, locked in behind the driver's seat.  Traffic suddenly stopped on I-35.  I turned sharply to the shoulder and she hit the floor.  We couldn't get her back, so she road the next eight miles on the floor.  Hoisting her back to the chair really tired me out and I 'm sure sent my pulse north of 150.  It's amazing how much fitness I've lost in two months of chemo, etc.  Sherry, by the way is well and we ate a nice meal at Macaroni Grill.