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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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

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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

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D-15: Life’s a Whirlwind

Whew! Life since last Tuesday has been a whirlwind of activity or trying to catch enough energy to enter the fray again. I have had time to write; I haven’t had the energy. IDSC_7852t’s not that I have forgotten all of you since “Houston or Bust”; I have just been too busy or too tired.

With that said, I will try to get you up to speed. We (Melanie, Tara our Oregon daughter, and I) left Hot Springs at 6:10 AM, just 10 minutes off target. Google Maps nailed the travel time of 6 hours and 45 minutes almost to the second. We arrived and registered at Hospitality Apartments just before 2:00 PM. I drove. Tara navigated. Melanie was the back seat driver (a silent one for the most part). We were lost only once and that cost us no more than 5 minutes or so.

Then came the unpacking and putting away. After a long drive, unpacking was the biggest challenge. That done, we unpacked the essentials and rested the rest of the day. For the first time in our married lives, Melanie and I are not sleeping in the same bed. Twins. We push them together, but it’s not the same. That cavern in the middle is a bit restrictive. Wednesday was a non-medical day, so we did more unpacking and putting away. Still not completely done with that. When our new “home” is photo ready, we will post pictures on our Harley’s Super Heroes page. We all went to a Wal-Mart allowing for some shopping, exploring, and practice driving in Houston. Then, we rested.

Thursday was the first medical day with a large blood draw (14 vials) followed by visits with my transplant doctor, Dr. Khouri, and several other people on our transplant team. We ate is Anderson Café that day then came home. Melanie and Tara went shopping again. This is like setting up house all over again. We brought all the stuff we thought to bring packed in the car. Now we have to buy the stuff we didn’t bring (perishables) and things we should have brought but forgot about or didn’t have room for. I tried to catch up on my resting.

Friday, was a larger medical day, ending with a PET scan scheduled for 2:00 PM. Fortunately, everything ran ahead of schedule and I finished before 2:00! Amazing. Tara took time to visit with a friend overnight and returned on Saturday.  Melanie did laundry on Saturday, I puttered around the house and rested. We read the necessary documents from our doctor about the transplant procedure. It seems I am in another trial. This time I will be administered a different drug for pre-conditioning. It has been an exhausting time.

DSC_7840Sunday started with “attending” our church, Lake Valley Community Church, via internet. Melanie and Tara took a class on maintaining my CVC, the external port in my chest used to infuse drugs. I drove them to the hospital then drove around the Houston area for a while. Part of that time, I walked through a nice little park with a wonderful water feature. Of course, I took my camera and have some nice pictures. The one attached to this blog is an example. Tara and Melanie went shopping for more essentials. I rested from my 2 hour adventure.

Today, Monday, was filled with morning tests and a long nap. Now I have time to write all the stuff that I was thinking about. Unfortunately, I don’t have room to do that now.

Oh well. TTFN.

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T-17: Goin’ back to Houston, Houston, Houston

T-18Dean Martin had it at least partially correct; we’re goin’ back to Houston, but not because it is gettin’ lonely in this old town. We will leave all of our friends behind and go to the big city because that is where the healin’ is. Tomorrow is the next big day. Houston or bust, baby!

We picked Tara up at the airport last night – about three hours late. Two planes in Las Vegas didn’t want to leave Vegas. I guess they were afraid someone might not know the rules: What happens in Vegas … you know.

Final packing is today. In spite of the multitude of lists we’ve made, I am sure we will forget something that we will need down the road.

We received phone calls from Hospitality Ministries while in church yesterday. An apartment in a “free” location set up specifically for people with long term treatment in their future became available. After a bit of discussion, we decided to take it instead of the Brompton Apartments through Church Apartment Ministry. The only cost is a $100.00 cleaning fee. The down side is that the stay limit is 3 months. We will be in Houston for 4 months. We will have to move one time. Hopefully, we will have made friends who can help with this unexpected transition. I have no idea how I will feel three months from now.

So you can imagine we are tired from the late night, weary from packing, and excited about the journey. While we are leaving our friends behind, physically, many of them have volunteered to send us greetings on a regular basis through the magic of electronics. Facebook has its flaws, but is still a lifeline to those of us away from home. I will post our Fb addresses at the end of this post. Of course, if you are reading this, you know about the blog. Feel free to share it with your friends. It is our intention to continue this blog throughout the process.

I have been adding friends on Facebook lately. The most recent was last night. This new friend is middle aged with a youth’s blood disorder, aplastic anemia. We have shared over the past couple hours. Please pray for her. She contacted me through another FB friend who has started his treatment for a different blood disorder. He is about a month post stem cell transplant and is doing well. I found him through a recent reconnection with his grandmother, a former high school classmate. Funny how God puts us together at the appropriate time. Speaking of appropriate timing, I made contact with another former classmate, a bff without the forever part since we haven’t seen each other since graduation. He is at least a year post transplant – at MD Anderson. That is not to mention another FB friend with whom I made connections through a post on MD Anderson’s “Cancerwise” blog sight. Both these friends are part of my encouragement team.

God is indeed wonderful.

This post is short for obvious reasons. I’ll write more from Houston, Houston, Houston.

Addresses:

My Facebook address: www.facebook.com/harley.hudson

My Facebook page: www.facebook.com/harleyssuperheroes

My blog: www.harleyhudson.wordpress.com

Melanie’s Facebook Address: www.facebook.com/melanie.hudson

 

 

 

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T-20: Packing the Most Important Thing

T-20Even with all the planning and packing, it is easy to forget something. As I’ve mentioned before, we have lists. I think we even have lists of lists. It is doubtful that we have forgotten anything that we need, might need, may need, or have a remote possibility of needing. Now the big question is, “Will it all fit into our car along with three people?”

I rather suspect packing will be an interesting experience. If things go my way, everything that needs to be packed will be brought out to the car before anything goes in. I am a meticulous car packer. I have a method. That method leads to a packing job so tight a mosquito couldn’t live on the air left in the trunk. At least that’s the plan … according to Harley.

Reality may be different. It usually is. Melanie will come out and say something like, “You can’t pack that there. I need it up front with me.” Uh. OK. Sure, it fit perfectly in the place I had it. Doesn’t matter. Out it comes only to join two coolers, overnight bags, snack bags, and other “necessities”.

Even worse is this one. “Where is that small box with … in it?” What box? There are a dozen small boxes in there. What does it look like? “You know. The one with the writing on the outside.” I look at the boxes. Half of them have writing. Out comes every box to be opened, found, added to, or taken away from, and repacked.

Of course, Melanie isn’t the only obstacle to my perfect packing. Our oldest daughter is coming to help. Tara is a lot like me, a take charge kind of person. I can see it now. She carries a box out and sees what she thinks is the perfect place for it. She stuffs it in just as I turn around with the box I planned to place in that location. Boom! The question is “conflict or acquiescence?”  I think it may depend upon how tired I am at this point. I know I will try my best to be accommodating.

I do have to remind myself that there is something that I need to pack plenty of. Even if I take an overabundance, it won’t take much room. It may be huge, but it is compact. It will fit anywhere. It is an essential item which will see us through any possible difficulty. Still, it is easy to forget. What is it? My handgun? No. An extra gas can? Hardly. Blankets? Provided. What can be so important but still be so easily forgotten?

My faith. It is easy to rely upon the physical. Tara will help drive. People are taking care on the home front. MD Anderson and my doctors are the best in the world. But, they aren’t God. People fail. MD Anderson and my doctors loose a patient now and then. God will never fail. In Him I am secure no matter what challenges I face. I trust that He and He alone will by my strength and my salvation. He can use Tara, other people, MD Anderson and my doctors. I must always remember; these are just tools in the hand of my mighty, wonderful, gracious, living, loving God.

I’ve packed my faith. I challenge you to do the same. When trials come, and they will, exercise your faith and trust the God who will never fail.

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T-23: The Pieces Fit

T-23This whole experience is like a giant puzzle. You know the type: a fantastic picture of something, maybe a copy of the “Mona Lisa” or a barn in a field of waving grass cut into 5000 different pieces with protrusions and matching dips in them. The worst puzzle I ever saw was one my mother, who loved a good puzzle, gave up on. It was a picture of a white birch forest with snow on the ground. It was almost totally shades of white and vertical lines! Ugh.

Well, our life is like that right now. When we started looking at the Stem Cell Transplant (SCT), we faced a pretty “picture” in which I underwent treatment and came out “healed”. Yup, nice picture: simple, serene, uncomplicated, with a joyful outcome. That was in April of last year. Then we opened the box. What appeared to be a simple puzzle was indeed a multitude of parts awaiting assembly.

We did what every good puzzle person does. We tried to make sense of what we had. We turned all the known pieces face up and began to look for “edge” pieces. You should always start with the frame and work your way inward, right? So we defined the frame. Well, we tried. We were supposed to meet with an MD Anderson doctor on a Monday, so we traveled to Houston on Sunday. On the way, my temp spiked to 102 degrees. We called our local oncologist who suggested ibuprofen and continuing the trip but going to the ER immediately upon arrival. We did, and we found more parts to the puzzle.

I was admitted to the hospital (not in the plans). We were assigned the wrong doctor. That was changed. The Stem Cell Transplant was postponed, and a trial drug was suggested. More pieces? What’s with this puzzle? I seemed to grow before our very eyes. Of course everyone knows that the more pieces a puzzle has the more complicated it becomes. We were hoping for something resembling the childhood puzzles we had at home. This one was becoming a 10,000 piece quagmire.

My new Leukemia doctor, Dr. Tapan Kadia, helped make sense of the mess. He brought in Dr. Issa Khouri who became my transplant doctor. The pair of docs helped define the edges of the puzzle. Bring the CLL, Chronic Lymphocytic Leukemia, under control then transplant. Meanwhile, we were to place ourselves on the waiting list of several subsidized housing organizations for when we would begin the transplant. We did. And we kept changing the need date monthly – for over a year.

The next part of the puzzle was the control issue. We could get into a trial drug program. Easier said than done. The program wasn’t open … yet. “It is opening next month; come in then.” “We tried to call you, the program still isn’t open.” “The program is open now. Come on down.” It was. We did. And we stayed in a hotel for two months! We had been advised not to use the housing programs. Save them for the transplant. We were in the hotel long enough to get “resident status” refunding all sales taxes from our bill! They wouldn’t let us register to vote, however.

Eight months after starting the drug trial, ABT-199, that part of the puzzle was complete. Now the next part began. A firm date was set. Housing dates were changed. One housing volunteer told me to call while we were driving to Houston for the transplant and they would hopefully have something for us when we arrived! Uh, how do you spell “uncertainty”?

We began to plan our packing. We now had experience. We knew what we would need for a four month stay. Plan, assemble, pack,  un-pack (I still needed that item at home) buy this, buy that, find boxes that will fit in the car … all of those little strange shaped pieces were flooding our existence.

Meanwhile back at the ranch, things needed to be done around and in the house. Projects that had been put off had to be done. Unexpected problems popped up that had to be addressed. Will this puzzle ever make sense? Will it ever be completed?

Finally another good part of the puzzle was complete. Housing was confirmed – and we were still just over a week away from travel our travel date! Miracles do happen. We are still packing. It is just one week to travel day. The puzzle is beginning to take shape, and it looks sorta like what we thought it would though it is much bigger than we ever imagined. T-23 days and counting.

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