Kevin's Really Big Day

 

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

Download the book here

Please check out my formal journal at CURE Magazine, a world wide publication found in every oncologist's office. They have asked me to share my transplant experience. I also encourage you to read this post: How My Cancer Might Save Your Life. It's a quick read, and if you pay close attention, you'll be a different person afterwards. 100% guaranteed, or triple your money back.

WARNING WARNING WARNING - I'll keep this "PG" rated, medically speaking, but  I can't tell my story without some Pretty Graphic (thus the PG!) stuff.

Day 0: Thursday, February 19

After another pretty bad day, the magic happened. I'd not eaten well, very nauseous, tired, odor sensitive and unfocused. I survived on crackers (did you know Saltines have an odor?), milkshakes and ginger ale. I only did 2 miles, broken into 4 segments. Other than that, I spent the second day in a row slouched in the recliner. I watched too many episodes of Pawn Stars, Chopped, and some car racing show.

I figure, hey, if it was meant to be fun, there'd be a Ferris wheel, right? 


Pre-meds started around 9pm. Two hours of hydration via bags of saline. At 10:45pm, I got Tylenol and Benadryl. At 11:00, in comes the bag. Like my last transplant, it was pretty non-dramatic. The bag had 231 ml of donated stem cells (about a cup). After some very careful checks by two nurses to make sure the right stuff was going into the right guy, they hooked me up. I decided to lay in bed, since the nurse had to check vitals every 15 minutes and watch for any bad reactions. It took 45 minutes, half of which I dozed through. Afterwards, more IV hydration until morning.

No bad reactions, no rash, no chills. My main transplant doc says I'm a "boring" patient. I can live with that. Literally.

I dug up my picture of my auto transplant in 2006, and asked the nurse to take one last night. I happened to have brought the same shirt with me, so why not stage the same shot?

This time, I have hair and lots more bags on the pole. Most of those were empty by the time this pic was taken.


It was an odd feeling yesterday, sitting in my chair, knowing that somewhere in Europe a stranger was curing my cancer. The chain of processes and technology that links a man in Europe with a man in Florida, allowing a bag of cells to come halfway around the globe in a few hours just stuns me.

Lastly, my Cure blog is bringing in a lot of great comments from other transplant patients. My favorite quote so far is "Jesus and germs are everywhere!"

My Bible study yesterday morning, which I picked at random, had some great words for me. James 1, vs 2-4:

 ² Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, ³ because you know that the testing of your faith produces perseverance. ⁴ Let perseverance finish its work so that you may be mature and complete, not lacking anything.

Day +1 and +2, Friday and Saturday February 20th & 21st

The point of tedium and repetition has been reached. Every day's the same.Issues are caused partially the normal progession of the treatments, partly by the symptom management we've tried. Appetite has been poor. I've been living on a teenagers diet merged with the post flu recovery plan. Cheerios with a little milk; applesauce, vanilla pudding, instant breakfast, saltine crackers, milk shakes, and ginger ale. The nutritionist assures me this is going OK. She's working with me to sneak more calories past my nausea.

The other part of my problem is the medicine for nausea, Comprazine, turns out to be the reason for my hyper behaviour. Twitchy, nervous, pacing the room, climbing the walls, can't focus, can't read, can't type. This post is taking me forever, mis typing, wrong word orders, extra spaces, and incoherent thoughts. They switched me to another drug, adavan, which fixed the activity by bombing me into a three hour nap. Afterwards I did my mile walk. I felt stoned, so I put on Neil Young stoner music, got into the zone, and did my mile in a very dull sort of way!

I leave it to my coworkers to imagine Kevin amped up to a fever pitch of activity, and then zoned into near walking dead status. For the record, I didn't moan. And brains make me nauseous so you're safe.

Tomorrow I start the anti rejection drugs, and we'll see what side effects, if any, get loaded onto the pile.

Thanks to all of you staying in touch via text, phone, facebook, and blog posts.I'm humbled and blessed by my friends.

Day +3, Sunday February 22

 A much better day. The new nausea medicine kept me nearly level, I had enough energy to get two of my miles in before lunch, and best of all Sandy came for a visit. We had a pleasant afternoon catching up, watching me get IV's, and doing the third mile of the daily walk together.

Today I started the first of my anti rejection drugs. Which turns out to be an old friend, the "C" in my original CHOP-R regime. Weird using a chemo drug to stop rejection syndrome, but that's what it does. So it was chemo again, day long infusion with pre meds, post meds, etc. Do it again tomorrow.

Later in the week I start the "real" anti rejection drugs, along with preventative antibiotics and antivirals. The antifungals have already started.

Eating is still an adventure, with a surprise in every bite. So far tho, I'm keeping my weight up. And my hair, although that may change next week. Or maybe not.

Looking forward to two more days with Sandy, and hopefully continuing stability on all other fronts.

Day +4, Monday February 23

Well they may not have provided a Ferris Wheel At Moffitt's World 'O' Fun, but there darn sure is  a roller coaster. Woke up this am feeling best since admission. Peacful, restful nights sleep, good appetite, enough energy to get my morning mile in, shower, and ready for the Day Of Drugs. Quite a few more than yesterday, many the same, expected a good day. Sandy and I set out on a mission to conquer the Sunday Crossword puzzle, something we used to do years ago. Well about 30 minutes into the day, the Roller Coaster Of Chemo Fun went over the free fall fun of you-don't-want-to-know-about-it.

So they nuked me with some IV meds, which made me very peaceful, and fixed that for a few hours. Next try - same result. Did manage to get some serious crossword time in with Sandy during my coherent moments. I have a great piece written (in my head) for the CURE blog, but getting it out of unfocused eyes and drug addled brain through randomly performing fingers has proven tough. Maybe tomorrow, or later tonite.

Remembering everything here happens in Cancer World, not the place where you live, it hasn't been a bad day. Plenty of quality time with my best friend and lover, a soft bed, lots of naps, and many texts or calls from friends and family.

I'm encouraged to hear some of you are taking note of my walking challenge to myself. Out of 8 days so far, I'm 4/4 going 5K throughout the day. The others are 3.5K.  424 steps to a lap, 12 laps to a mile and a bit. How about all my readers grab the cheapo phone apps and try to make that many steps in a day? I floated the idea out to my last year's Runway 5K team to do some sort of virtual tagup on that day, whether I walk the 2 or the 5K.

Today is a tough one, might have trouble getting in mile 2, but it's still a long time until bed time.

My inspiration today is, as usual, Super Caleb. I wore his shirt today, and had Sandy take a picture at the bell that's the 1/12th of a mile turnaround, which we can't ring until we're sprung, but sometimes I touch it a little bit! Pardon the face, my insides and my outsides are trying to reverse entropy states. I hope all my readers will check in on Super Caleb, one of the two inspirations I have pulling my through this.

Day +5 & +6, Tuesday/Wednesday February 24th & 25th

First, the opening commercials: 

Please support my Cure Today  blog, which besides being a great organization that ministers to over 100,000 people, puts a few nickles in my pocket towards expenses.

Second, my marvelous company, ERC, Incorporated, has two bone marrow transplant patients here at Moffitt. They asked me to talk about registering for the Marrow Bank, and put it on their company blog.

Third, and I promise last, the intent of this ministry remains vital and busy (unfortunately because that means the cancer business remains high). The book, Taking Vienna is available for free download, along with two other, non-cancer related tomes.

Third again, so I don't break my promise, consider going back in this blog and reading this post: How My Cancer Might Save Your Life. 

All The News That's Fit To Print

The news that ISN'T fit to print will be posted further down.

I'm in a waiting period. The transplant is a big milestone, but not very dramatic. The thing most people don't understand about transplants, whether marrow or solid organ, is that there are two milestones and the second one is a way bigger deal. The surgery, (in the case of a heart of kidney) has very specific risks, and it's a really good deal when the patient survives the day. But that doesn't mean the transplant is over. The magic happens when the new organ and the old body agree to work and play well together. Hearts stay there pumping, kidneys filter blood and make urea, lungs put oxygen in the blood, etc.  Mechanically this goes on right away for solid organs. The longer term worry is rejection syndrome, which is hopefully controlled with drugs.

In my BMT, remember, we didn't open me up and whack in great hunks of marrow. My bones are a lot like a coral reef inside. Little calcium houses for living critters. We evicted, rather rudely, the old tenants by poisoning them out like all of a sudden they were vermin. The new stem cells were put in last Thursday night, and we're hoping they are busily moving in. Measuring for curtains, figuring out where to put the bed, flipping that mystery switch on and off. Then after settling in, they are supposed to get to work making more stem cells, that make more blood cells, that keep the Kevin Factory Of Life running. This process is called "engraftment" (which my spell checker suggests as "aircraftmen" which I find giggly for some reason. Must be the drugs.) That's supposed to happen between Day +10 and +15 (ish). Could be earlier, could be later. This is why my blood counts are plotted every day like the Dow Jones and NASDAQ on a board, and we gather around and analyze them every morning. The specific marker is the Neutrophil count, which are adult white cells, all ready to kick some infection butt. Normal range ignoring units is 1.5 - 8.0.  Mine are 0.19 today. Which means no kissing, movie theaters, or sharing food. Actually it means Bubble Boy.

Right now I'm living on my old, residual, dying cells. A very logical question is: "What happens if they all die off before the New Kids On The Block get seriously to work?" Well, I live on transfusions. Whole blood if it's a red cell problem, platelets if it's a platelet shortage. You know that whole Big Red Bus thing?  This is it, folks. THANK YOU.

Now, The News That Makes You Go Eew

I"m told at least one nursing class is following this blog, and I also use the information for helping patients know what truly to expect, so I feel obligated to put down the grisly details of going through a BMT.

<<<<<<<<<<<WARNING WARNING WARNING >>>>>>>>>>>>>>>>>

If you plan to discuss "How's Kevin doing" and ever expect to make eye contact with that person again, stop reading here.

I keep a running list of my number of treatments, types of medicines, number of surgeries, etc. Suffice to say its a whole honkin' lot of nastiness. This chemo is milder than what I had with the last transplant. And it's kicking my pale white saggy booty. One night, right after dinner, I felt like I'd been punched in the stomach. Within 2 seconds, a day's worth of food came out. I retched for 15 minutes. Then nothing. Got some meds, went to bed, woke up the next morning feeling ok. Ate a mild breakfast, and then 3 hours later same thing. Ate and drank nothing the whole rest of the day, 4 hours later, happened again. I'm talking curled around the toilet not knowing if I was going to fall over. You know that cord by the toilet in hospital bathrooms, to call for help? You always wonder, short of slipping and falling, what could make you pull it? Well I damn near broke the thing off. I wound up with three nurses helping me. One making sure I didn't bang my head, one steadying and wiping, and a utility infielder calling checking to see if more of them were needed.

This happened again, a few hours later, after complete NPO. So now I've had no solid food for several days, except a few trial nibbles that eventually resurfaced.

The other end has been quieter, but not a lot. One thing I learned last transplant is the importance of rectal care. When your platelets are low, that means you're a hemophiliac. You don't stop bleeding. When you're having day after day of uncontrolled diarrhea, you develop cracks, and sores that bleed. There's a protocol with medicated wipes, and creams that you learn to go through religiously. It still hurts, and it's miserable, but it keeps you alive. One blessing of living on bags of IV saline along, no food, is not much going on down there.

One thing I learned about nausea drugs is they also are used to control stress and mental health issues. I started with Compazine, which did ok-ish for my stomach. Within a day, though, I was climbing the walls. Twitchy, nervous, pacing, unfocused. Doc says "that's on us, not you" and took me off that one. Now I'm on Ativan, which makes me very peaceful and calm. My nights are just happy 3 hours segments of not too dreams. It's only fought my stomach to a standstill, about the level of the Ukraine/Russia cease fire. Time will tell on that one. To quote my favorite Night Court character, Buddy, "I'm feeling MUCH better, now."


Day +7 & +8, Thursday/Friday February 26th & 27th

Yesterday (Thursday) was The Bottom. My white counts hit 0.04 and everything else (energy, attitude, appetite) hit -10. I did manage to eat a little breakfast and walk a mile dragging my IV pole, but around 11am it all went Bravo Bravo Uniform.

To put it bluntly, (I've got nothing left to dissemble with) I was in the bathroom 20 times in 24 hours. Since it was such a dramatic change, they wanted to test for CDIF (a common infection) and until that test comes back you can't have any Imodium, etc. Once the CDIF test came back negative (thank God) I got started on Imodium, but by then my body was way ahead of me. So the night slowed to once every 90 minutes or so. I spent yesterday from noon to 9pm having Deja Vu from my last transplant. Huddled in a recliner, heaped with blankets, not even caring what was on daytime TV. I had a nice call from an old friend, and we talked an hour, which cheered me up a lot. Later in the evening I had several long rambling text conversations with co workers and family that helped also. I got a solid 15 FaceTime minutes watching young Kevin walking. Boy do I not envy Jordan and Lucas. That boy is a high energy curiosity machine!

My day nurse was overwhelmed with another patient, and wasn't able to help me much. My night nurse (comes on at 7pm) is an 11 year veteran. I asked her for a top to bottom med review with all the schedules as they are in the system, and they were TOTALLY honked up. Some were listed as "PRN" (as needed) that we'd all agreed should be given regularly, some were being held for other constraints that had been cleared days before. With over 50 meds, rotating nurses, doctor's floor rounds being done by committee (one Attending, two mid level Fellows, and a gaggle of PA's/ Residents/Interns), it's really hard to keep it all straight. This is why I am so vocal about people being their own advocate, or having a family member there. Nothing they did increased my danger level, all my critical meds were rigidly followed, but the comfort and secondary items weren't handled well. I was probably about 20% more miserable for a couple of days than I should have been.

The age of medical records is great. I have access, through the Patient Portal, to all my orders, floor notes, evaluations, and changes. Of course not everyone can read all that stuff, and I don't have the energy most days, but it's there.

Today is turning out a little better, a little smoother, and while I'm still rock bottom, the rocks are seeming a little bit softer.