A New Cancerwise Post and Video

This Cancerwise vidoe was recorded about three weeks ago. The accompanying blog was written last week. It includes something I have never done before in a blog post. See what it is at www2.mdanderson.org/cancerwise/2014/09/a-stem-cell-transplant-patients-tips-for-recovery.html

HINT: it sorta rhymes

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Day +53: Ten Reasons to Be Thankful

Thank YouOne of the latest challenges on Facebook is to name X number of things you are thankful for over Y number of days. (Notice the use of my high school algebra.) So I thought it appropriate to make a list of what I am thankful for.

 

  • A place to live in Houston. Hospitality Apartments has been a real blessing to us. We have stayed here nearly three months for a sum total of $100.00. Unfortunately, three months is the longest we can stay, so we are praying for new housing to be available from one of the several places where we have applied.
  • Melanie, my wife, my caregiver. We have been married nearly 48 years. I am the one who has been blessed because of her love. She is a real trooper. Not only does she take care of the apartment, cooking, laundry, etc., but she has learned to change my CVC dressing, administer my home infusions, and a multitude of other “nursing” things. I love this woman more than I can ever say.
  • Lucas. Dr. Lucas was the one who first diagnosed my enemy, CLL – Chronic Lymphocytic Leukemia. I think the diagnosis hurt her more than it did me. When she told me what she thought I had, it was my opportunity to comfort her, telling her that it was OK. She is one of the best doctors in Hot Springs.
  • Kota, my home oncologist. Dr. Kota has literally kept me alive for the last several years. Her knowledge and insight into CLL has kept this disease at bay. Even more important, she knew when she had reached the end of her expertise and sent me to MD Anderson Cancer Center.
  • MD Anderson. This specialty hospital is the greatest in the world. The research done here has changed the way cancer is treated. I was blessed to get into a drug trial lead by Dr. Wierda and administered by Dr. Kadia. It brought my runaway CLL under control enough to undergo a stem cell transplant.
  • Khouri and his medical team. Dr. Khouri is my transplant doctor. Under his leadership, I am progressing as expected through my transplant experience. I am doing well, gaining strength every day. My latest tests show that my immune system is now 88% donor. That is very good and well on the way to 100%.

 

My list would not be complete without addressing some folks back home and around the world.

 

  • Tara Johnson and Sunny Mirchandani. Tara, our oldest daughter, left her family in Oregon to come to Arkansas to help us in our move to Houston for my transplant. We couldn’t have done it without her. Sunny paid her air fare to get her to Hot Springs and back home to Oregon.
  • Christy Fellows. Christy is our youngest daughter. She is checking our mail, scanning what we need to see, emailing it to us. She has been Melanie’s right hand woman back home doing all the things that need done there.
  • Tammy Rhoads. Tammy, our middle daughter, has been an encouragement to us. Because of illnesses, she has not been able to do as much, but we certainly appreciate that she is taking care of two of our grandchildren, one of whom has a chronic illness.
  • Finally, but certainly not least, our prayer partners and encouragers. People all around the US and various nations around the world have been lifting us up in prayer. I am absolutely positive that their investment in our lives has played a large part in my healing and our peace.

 

The list could continue, but alas, I must stop writing. To all who have and are playing a part, great or small, in our healing adventure, THANK YOU! We couldn’t do it without you.

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Day +47: Wow! What a Ride.

Roller coaster“Wow! What a ride.” That’s what I expected to say about now. I wasn’t thinking the trip would be like a giant roller coaster. That would have been too much. Instead, I thought it might be like riding a ski lift in the summer: gliding up the side of a beautiful mountain, viewing mountain range after mountain range like waves rolling into the distance. But no, the Stem Cell Transplant (SCT) experience has not been like that. It has been more like a ride from my past.

Decatur, Illinois used to be the host city of Chap’s Amusement Park. Now Chap’s never did compare to a modern park such as Six Flags, but for a pre-teen, it was an exciting place. One feature was the train ride which circled the park and traveled thorough a field before it entered a fake tunnel then returned to the park. The trip was slow and boring for an adult, but at seven my friends and I loved it. Nothing ever happened. No wild animals jumped out at us. There were no thrilling trips through or even over a raging river, just a sedate break from the excitement of the main park.

That is until the trip that made personal history. On the last time I rode it, just before the train entered the tunnel, while it was still in the field, it derailed. A low speed derailment in carriages that would barely hold six people was in no way dangerous, unless you were hanging out the window. We weren’t. The cars gently rolled on their left sides. Being energetic youth, we climbed out the widow and walked through the field back to the park with its more exciting rides. WOW! My very first train crash – and my last, I hope.

My experience with a SCT has been like that; a lot of routine and little excitement. The only derailment was a trip to the ER because of a 100.8 fever that was gone by the time the staff checked me in. That did not prevent a multiple day inpatient stay only to discover four little cells of a virus that 80% of adults carry every day. The ultimate treatment has been a daily infusion of an anti-viral drug that Melanie gives me in our Texas home.

Life is now back to the routine daily visits to the Ambulatory Treatment Center for a three hour infusion of Magnesium and Potassium. At the same time I receive a one hour infusion of an anti-fungal medication. Routine. Nothing exciting. Rather boring, actually. When it comes down to it, after a Stem Cell Transplant, boring is good.

No, the ride is not a “Wow” experience, but it is rewarding to know that my donor’s stem cells are now my stem cells and that they are doing their job replacing my own cells and destroying the remaining 5% of CLL cells (down from 30% before the transplant).

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Day +38

I seriously apologize for not posting for so long. I just have not had the energy to think superheroabout it. I have, however, written a new blog for “Cancerwise”. You can read it and view the accompanying video at:

http://www2.mdanderson.org/cancerwise/2014/08/a-day-in-the-life-of-a-stem-cell-transplant-patient.html

PS: there is a link at the bottom of the blog post to all the other blogs I have written for “Cancerwise” including the first video blog. Feel free to check them out.

Enjoy!

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Day +11: I’m Brave? I’m a hero?

I’ve read it from many of my Facebook friends. “You are incredibly brave.” “You are a hero.”

Cap AmericaThe thing is, I don’t feel like a hero, super or otherwise. Nor do I feel particularly brave.

Yes, I’m doing something that many would not do, but they have no reason to do what I’m undertaking. I’ve used experimental drugs. I did it for me. I want to be healthy. I want to be here for my wonderful wife when she needs me. I did it for other CLL  (Chronic Lymphatic Leukemia) patients who may find a cure through what I have tried. Yes, I’m having a stem cell transplant, but those are nothing new and are not considered experimental. Well, OK. I concede that the transplant protocol I’m on is rather experimental, but only the first chemo drug and it is not new, only used in a new way.

No, I’m no hero.

Nor am I particularly brave. I’m doing what needs to be done. I think anyone facing what I face would do the same thing. I had come to the point that nothing FDA approved was working. I really had no choice but to try something new … or face death. The risk I took was not very great. I asked my transplant doctor what the success rate was for me. His answer, “You are in the high 70% range.” If he had said the low 30% range, I probably would have backed down and tried other experimental drugs.

Why? My mom died of breast cancer. She survived nearly five years post-surgery before it returned with a vengeance. She suffered through something like two years of chemo with no progress, just misery. Melanie and I agreed then that we would not allow that to happen to us. If we did not have a high chance of success, we would treat the symptoms and travel the nation until the end drew neigh.

Mom was brave. I’m a coward compared to her struggle.

Perhaps people see what I post, what I write about in this blog and the Cancerwise blog and think that is why I am brave. I put my life into the electronic world of the internet for all to see. That is not bravery. That is a lifelong willingness to help others who are in need. I did it as a pastor, as a teacher, as a giving human. That stems from my love of Jesus. He was brave. He was the first real super hero. He is my hero. I’m simply trying to walk in His footsteps, and not really succeeding very well.

So now you see why I don’t consider myself either a hero nor brave. I’m just an ordinary man doing what he has to do the serve his Master, Jesus.

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Day +10: We Have Liftoff!

I know, I haven’t written anything lately, but that doesn’t mean I haven’t been bRocketusy. This transplant business is heavy work! (Well it is, but not like bailing hay heavy.) The truth of the matter is that I haven’t had the energy to even think about writing unless I absolutely have to. Let me tell you about all that has happened.

Day 0 dawned as usual. I started a blog that I planned to finish and post for you all. I came to a stopping place and stopped until after the actual transplant when BAM. My heart skipped into Atrial Fibrillation. That is not good, but is a common reaction to all the heavy chemo treatments I had undergone in the previous days. That brought in a cardiologist and continual monitoring. It didn’t stop the transplant which started at 10:15 AM and lasted about two hours. Everything was going smoothly until that evening when I experienced “shake and bake,” the technical terminology for severe chills followed by a high fever. This wasn’t unexpected, just not on Day 0.

Since then, things have gone smoothly. I had gained 30 pounds in water weight, so that brought on multiple doses of Lasix to draw out the excess fluids. I usually excreted about 2.5 liters of water after each dose. I am finally down to the weight I came in with. The only problem is that I haven’t had much of an appetite, so I should be down a few pounds.

Engraftment was suspected on Day +7 and confirmed on Day +9. That is early. I figure it is a reward for “shake and bake.” I am now being prepared for release perhaps as early as Day +13. That is almost unbelievable. My meds are being cut back or changed from IV form to pill form. As long as I don’t spike a fever, get diarrhea, or become nauseous, I will be on my way to our apartment sometime next week. I will become an outpatient.

This means I will be visiting the Ambulatory Outpatient Center every morning for treatment, blood products as necessary, and a general checkup. This will then taper off until my visits are to the Stem Cell Transplantation Center and my transplant doctor, Dr. Khouri.

I have to admit, the doctors and nurses here at MD Anderson in Houston, TX are the absolute best. I do not have a single complaint but only praise. They fit my personality perfectly.
I also have a confession to make. That blog I began on Day 0- I finished it and gave it to MDA’s “Cancerwise”. It will accompany a video diary of my transplant experience. We have been working on it since Day -1. MDA has decided to publish the first part of the video and needed a bog to help explain it. I will let you all know when it is up and running. My videographer and producer have been visiting and recording every Tuesday and Thursday whether it has been a good day or a bad day. In the video, I talk about what has happened or what I expect to experience. I want anyone who is looking at a stem cell transplant to know what they might expect along with tips to make their transplant a bit easier.

That’s it for now. Talk with you again in a few days.

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Day -3: A Touch of Humor

There are two types of people: people who see obstacles and grumble and those who see obstacles and have fun with them and count their blessings. I’m a member of the second type.

I’ll use a couple examples from my Facebook postings as examples. The first one is about the first is some fun I had with my phlebotomist. Bear in mind that the morning blood draw is usually between 4:00 AM and 5:00 AM, well before dawn. I have a choice to grumble or have fun.

I finally broke one. My phlebotomist came in early this morning – well before dawn. She didn’t take much admitting that she was not particularly hungry. Hmmmmmmm. I put her to the test. Well, I bluntly asked, “Are you a vampire.” She said, “You figured us out.” It wasn’t hard. In hospital they always arrive before dawn. In Fast Track Lab, they work in a windowless room and only leave long enough to call a name from the doorway before they duck back into their lair. This is the same arrangement at home as well. See what I mean? As my phebotomist/vampire scurried down the hall to her coffin, I believe I heard a maniacal “Mwha-a-a-a-a!”

And I’m not even on morphine or any other pain killer. ;-0

The second Facebook example is the experience of the first day. This time the choice was to count my blessings.

A hospital is like a living breathing organism. Think elephant in Lord of the Ring size. It moves at it’s own pace. Last night was a perfect example. We were supposed to start my Rituxin at 8:00 PM. It didn’t arrive. We were promised 10:00 then 11:00. It wasn’t for lack of effort on the part of beautiful, competent nurse Ambly who wore the phone out calling the pharmacy. I finally went to sleep. I vaguely remember raising my arm for blood pressure checks, lifting a finger for O2 readings and opening my mouth for temp taking. Somewhere in the deep recesses of my dream world, I knew the drug was being administered.

When I asked Ambly what time she finally started the Chemo, she told me 2:00 AM. It finally finished at 7:20, just before breakfast arrived.

Don’t misunderstand. I’m not complaining. I know the pharm was doing the best they could, and in a facility this large, emergencies come first. Chemo treatments are low on the totem pole.

I still believe I am in the perfect hospital for anyone with cancer. I hear of miracles every day – people who had no expectation to live more than a few weeks are multi-year survivors all because of the great staff and creative minds at MD Anderson.

Thank you, Ambly. Thank you pharmacist, whoever you are. Thank you MD Anderson.

Last night provided another example. The nurses keep track of my liquid I/O, In Get out of my wayand Out. Yesterday, the intake was about 5 liters, 3/5ths of that IV fluids with or without medications. Output was much less than that. The solution according to Dr. Olson, the in-hospital rounds physician this week, was to give me a dose of Lasix. If you recall, they give Lasix to race horses to keep them from bleeding. I think that is a cover story. After my experience of running to the bathroom every 45 minutes all night, I have a different reason for giving it to race horses. They will run faster during the race in order to get to the finish line so they can stop and pee!

Well, there’s my dose of hospital humor for the day. I hope you enjoyed it. Better still, I hope it helps you through any trials or tribulations you face today and in the future.

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