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).

Posted in Medical | Tagged , , , , , , , | Leave a comment

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!

Posted in Medical | Tagged , , , , , , | 1 Comment

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.

Posted in Uncategorized | Tagged , , , , , , , | 2 Comments

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.

Posted in Uncategorized | Tagged , , , , , , , | Leave a comment

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.

Posted in Non-medical | Tagged , , , , , , , , , | Leave a comment

Day – 6 and Counting

I’DSC_7890m glad today is over. We started out being early for everything, blood/specimen collection and a CT of the sinuses (just regular sinusitis as it turned out) then things kind of went to pot, timing wise. We waited for one doctor until it was time to see another. Switched waiting rooms and waited. Saw my leukemia doctor, Dr. Kadia, for the final time. Went back to the stem cell transplantation center and waited some more. We were well behind schedule by this time.

But I know how to get into the doctors into exam rooms. I opened my Kindle and started reading. Works every time.

Dr. Khouri, my transplant doctor, was concerned about my liver enzymes being too high. He ordered a breakdown, STAT. 20 minutes later, he said everything was good to go. Whew. After this week, I didn’t want to start the process over. If you didn’t know, I emailed the clinic on Monday about a white spot in my throat. That prompted a quick visit to the clinic where they eventually ordered two more antibiotics and Tamiflu. Of course, this prompted a trip to Sam’s pharmacy.

Last night was another scare. When I settled into bed a bit after 10:00, I felt a bit warm. I took my temp with one of two digital thermometers. It read 100.4. One tenth of a degree from the 100.5 that would have necessitated a trip to the ER. I tried the second digital thermometer. It read 100.0. Which was right? I decided to wait a few minutes and try again. 100.2 and 99.9. A few minutes more and 99.9 on both thermometers. I went to sleep and had weird dreams. This morning the temp was down to 98.9 at home. 98.7 at one vitals check and 99.1 at the next. I was not sure I would be cleared for takeoff.

See what I mean about this week?

We had my CVC dressing changed and attended a “Care During Transplant” class at 2:00 where we went over nearly everything in the Transplant Patient Book via slides and lecture where we learned a few things we didn’t know. We were joined by 5 other patient groups.

So, tomorrow is the first big day. Admission. Only 6 days and a few hours to Day 0. My white blood count will be 0. My platelets will be 0. My hemoglobin will be low. Everyone who comes into my room will have to be masked and gloved – including Melanie. She’ll be so cute in a mask. Just pray with me that it never comes to the mask, gloves, and GOWN stage. That would mean that I have a transmittable infection. Don’t want that. Uh-Uh. No way.

Now that I have bored you with my life history, I want to thank all of you faithful readers for your support. I pray that I have helped some of you along the way. No, I won’t quit writing, so stay tuned for more to come. I have a surprise for you all, if it works out.

TTFN

Posted in Medical, Non-medical | Tagged , , , , , , , | Leave a comment

Day-9: Hurry up and Wait

IMG_1195All the travel is done. All the tests are complete. The first round of chemotherapy has been infused. That was the “hurry up.” Now comes the wait. At least it gives me time to think. That’s a good thing … isn’t it?

Here’s the problem. I am at a point that I should not be in crowds. If I succumb to an infection, the stem cell transfusion (SCT) is delayed. If I do go out, I should wear a mask. I hate breathing through a mask. It is easier to stay “home” in our little efficiency apartment. That wouldn’t be bad if I felt like doing anything. I don’t. That is why this missive is so late in coming.

Melanie thinks I should begin packing for Thursday’s admission. Too early for me. I’m more of a day before packer. I know what I want to take. All I have to do is throw it all in a suitcase. Of course, half of it is in use right now, so that complicates matters. I do have a shelf assigned to “things to take” and it does have something on it. Several somethings actually.

Melanie has taken away most of my former responsibilities. She won’t let me empty the trash. The dumpster is … well, a dumpster. So, I make the beds (yeh, twin beds) in the morning and turn them down at night. I also push them as close together as they will go. Still, a crevasse of 4” remains. My main responsibilities are … making sure I take my meds on time. That’s easy if we eat meals on time. If we dare eat late, it throws the whole schedule out of sync and I may forget … like last night. Yes, I am a creature of habit.

I took a shower this morning. Had to “Cling Wrap” my CVC line attached at my chest. I can’t get the dressing over it wet or I will have to make a trip to the hospital to get it changed. Melanie is not yet certified for that. She can flush the three attached lines with heparin. She is also certified to change the IV caps once a week though it will be a while before that to happens … like after I’m released to go “home” after the transplant. Interestingly, we are told to correct the nurses if they don’t do it right! Sure. The first nurse to access it did it wrong. We kept our mouths shut. She wasn’t too far off. Still ….

I’ve rambled long enough, so I should sign off. But first … I may forget my toothbrush Thursday. I may forget a lot of things, but two things I will never forget. First, I will remember my sleep mask. Hospitals are never “dark”. And nurses have a way of coming into the room and turning on the lights to check my vitals every two or three hours. The sleep mask keeps the darkness in and the melatonin flowing so I can go right back to sleep. Second, I will not forget my “white noise” system. Hospitals are never quiet. I play a thunderstorm through my cell phone’s Bluetooth connection to a Jawbone speaker. Nice sound and it keeps the hall noises at bay (and the tinnitus in the background).

TTFN

Posted in Non-medical | Tagged , , , , , , | Leave a comment