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.

Six Days To Transplant

 

“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.

Administrative Detail: I'm going to update this daily, adding new info at the bottom, so anyone playing along at home can have all the gory news that's fit to know, every day. If you would help my bank account out by going to the Cure blog each time you read this one, it would sure be appreciated. That blog has already been viewed 476 times as of Valentine's day. But more importantly, and the reason for being so "out" about my disease and treatment, is that I've already made a new connection with a first time patient heading into this process. Hopefully I can ease his anxiety a bit, and give him useful information. Your support of my efforts goes places only God knows.

Leaving Day - Thursday, February 12th.
 
Tough day. I worked 3/4 of the day, spent most of it saying goodbye to the incredible, supportive friends I've made over the years of my career at KSC. It's a true blessing to work with a couple of hundred of your best friends, and that's how I feel about all of the great folks out there.

Saying goodbye to the "kids" living at home was even harder. And, I might add, even to the dog. Only knowing that I was going to come back, in 3 months, cured of this miserable stinking horrible awful ugly hideous disease, makes it acceptable to leave part of my very being behind.


Day -6: Friday, February 13th

The first event in a transplant is insertion of a Central Venous Catheter, or CVC. They are sometimes called by their brand name, such as "Neostar" or "Hickman." They are also classified by the number of ports they have (number of tubes going in). The technical term is "lumens." So I have a three lumen catheter. This goes from my chest, under the skin, over the collar bone, and into my jugular vein. The reason for the catheter, as opposed to using my port or an I.V., is that it distributes the chemo straight into the highest volume blood flow, which helps keep the veins from getting beat up. Second, then the actual transplant happens, a bigger tube keeps the stem cells more intact.

Note: this isn't MY manly chest, just a random internet dude.





This was just "another day in the life." Outpatient surgery, light anesthetic. Afterwards we met with a nurse to teach us how to take care of this, since I'll have it for 90 days. Then, off to a nice dinner of stuff I can't have after the process starts. In this case, Five Guys. Later on I can't do fountain drinks, raw vegetables I didn't personally wash, open condiments (like catchup dispensers), or meat cooked anything less than dry and crispy. These rules are to keep me from getting food poisoning, cold, or other infection.

Sleeping took a pillow under my arm to keep things protected, but other than a little soreness, gone by morning, not a bad night.

Day -5: Saturday, February 14th

Wasn't due at the hospital until 1pm, so we had a nice day together. Late breakfast at the hotel, exercised on their treadmill and elliptical machine, lunch at our favorite place in Tampa (Taco Bus!), then to the clinic for blood work and the expected delay in getting admitted. Lesson learned from last transplant, we didn't wait around the hospital but slipped across the street for Cold Stone ice cream. I had the Churro Caramel Crave as my last treat to myself. Worth every one of the billion calories.

While we were eating, got The Call. Room ready, come on over.The walk from the car to the hospital was a bit tough. Knowing it was the last sunshine and fresh air I'd feel for a month sure made me inhale deeply and enjoy it. After admissions, came up to my room. They are very nice, way better than last time. My room is about 375 square feet, not appreciably smaller than the house Sandy and I started in. Big TV, couch, recliner. If it wasn't for the hospital bed and lots of medical junk on the wall, this would look like an Ikea staged apartment.

 

 Dinner was Random Request since I got here late. Actually was worth eating, roast beef, gravy, mashed potatoes, chicken soup, chocolate shake, pound cake. They put a lot of emphasis on eating while you can. Later you may not feel like it, so like a bear getting ready for winter, I'm packing on the fat.

They do infusions late in the evening. Tonite was Fludaribine, only a 30 minute treatment with no real side effects. Then it was off to bed.

Day -4: Sunday, February 15th

Not a bad night, with the expected wakeup at 4am for lab work. What was different was another wakeup at 6am to draw some more blood, due to "an unfortunate and rather gory accident in the lab involving a centrifuge." That's enough about that, I think.

All three meals weren't bad at all, so far the food is exceeding my expectations. Being a Sunday, it should have been pretty quiet. Well, not so much. Here's a Day In The Life Of, staring with air conditioning problems. Yesterday, Sandy and I about got cooked in the room. Someone from maintenance came up and clambered around in the ceiling, and it cooled off. And cooled. And cooled. By the 4am wakeup, I was in two layers of clothes and under three blankets. A very nice, and very apologetic, gentleman spent most of the day in room and overhead, along with a varying pack of other techs, getting it sorted out. I alternately cooked and froze as he manually tried to regulate temperature while fixing it. Finally, around quitting time, they got it fixed.

One major thing that has changed since my 2006 transplant is the emphasis on walking. Back in the day, they just wanted us out of bed all day. Now, they really push walking. A mile a day, minimum, unless you just can't do it. They really want two. People who are up and walking do way better than those who stay in chairs. They push hard, even among the pretty ill, to at least get out of bed and stay in the recliner. Up is good, down not so much.

The unit is laid out in a square, except one corner is the lobby, which is Forbidden Territory Because There Be Dragons There.  Germs, actually, it's on the outside of the positive pressure area. Eleven round trip laps around the square is a mile. One mile is required, two is desired. Because of my family motto, "what's worth doing is worth overdoing" I set myself a goal of 3 miles a day. And because that doesn't rhyme (it's all about finishing with style, see Taking The Big Ride for my thoughts on finishing with style, doing it right, and over-conquering Vienna.) I decided to tack on even more, and make it 3.2 miles. My new goal is "5K, Every Day!" Today I did it in three segments, doing 13 laps after each meal.

Right now, I'm one of the feeling-good newbies. We're easy to spot. We have energy and hair. Folks halfway through seem to have energy and no hair, while the folks at the end have neither. I have to remind myself I'm in a pretty unusual position. Most people come in here, like I did last time, having been through months of treatment that has them pretty beaten up already. I've spent the last year on a mild medicine, working full time, doing work around the house, and running races. Other than carrying an extra 20 pounds, I've never been healthier. The nurses are struggling to find things to be worried about! I know that soon, things will go down. How far, remains to be seen. I might not keep my 5K goal, but I'll try for it and see what happens.

Remember, my whole approach to cancer is summed up at the top of this blog. It's about just flat overwhelming it.

Day -3: Monday, February 16th

First, the gory details. Then the deep thoughts.

Did my 5K today, in 3 segments. Still feeling great, no apparent effects from the chemo so far. Today was just another day in the ward, same routine, although at one point there was a line almost out the door. Papa Doc (not the Haitian one); Mama Doc, and Baby Doc were three infectious disease specialists, an Attending, a Fellow, and a Resident. A Physical Therapist, two social workers, a nurse, a tech and my case manager. And the custodian.It's nice being the popular kid. Luckily the three different transplant doctors came later!

Life in "The Unit" revolves around your white board.  Just like in the space biz, it's all about Launch Day, or in this case, Transplant day. The purple are the critical metrics, blood counts. Mine white count should be on a steady decline to near zero. Tonite is "just" Fludarabine, which has been pretty mild so far. Tomorrow is the nastier one, Melphalan. That's the one that can cause mouth sores, hair loss and other less discussable side effects.

Doing a lot of walking, short laps in hospital hallways, lets me have a lot of time to think. Today's musing was about how different my life is, just a few days separated from normal. First, my time, 24/7, is devoted to taking care of my body. Hand washing, mouth cleaning, exercise, heart monitoring, lung checks, vital signs, rest, blood counts, cholesterol, skin, intake/output, all checked and watched many times a day. At least a dozen people have the freedom, and are professionally obligated to, ask me very intimate questions out in the open. I've been around nurses since I was 13, so I'm rather used to the casual attitude towards subjects that aren't acceptable to the general public, but it struck me today how comfortable it is to speak about these things where there's no stigma, just a 100% laser focus on keeping me alive.

I think this transparency, and focus on caring for ourselves, is a lesson we should all learn. How many lunches have I skipped because something was more important than eating? How many walks because a good show was on TV? How many times did I ignore a symptom of something, then later got horribly sick when I could have fixed it early with a trip to the doctor?

At the wonderful going away party my work family threw for me, my message to them was pretty explicit. Even if you're young and healthy, you should be going to the doctor every other month! Annual checkup, dentist every six months, dermatologist every six months, eye doctor annually, even if you don't wear glasses. If you're female add the GYN to your list. If, like most of us, you have a specialist, add that. Allergist, Gastroenterologist, Cardiac, or literally whatever ails you. Pretty soon you're up to one appointment a month. I bet most people maintain their car better than they maintain their bodies!

And ... get the tests. Pap smear, mammogram, prostate exam, chest xray, blood tests. Anyone who's had breast cancer will tell you they'd take a mammogram a month rather than treatments. Colonoscopies? Hate the prep? Well, try colon surgery, chemo, and radiation instead.

Sorry to get all preachy, but sitting in a cancer ward with a bunch of wonderful, miserable, beat up, up beat, pitiful, inspirational people puts me in that mood! So take care of your body, be open about your health, and encourage others to do it, too, and you'll feel good about yourself, and just plain good!

Day -2: Tuesday, February 17

Another day, more food, more chemo. Tonite's menu includes another 30 minute Fludarabine infusion, and the one shot of Melphalan I'll get. Interestingly, back in 2005 when I was doing my very first round of chemo in Titusville, the nurses there were experimenting with something they'd heard about, packing patient's mouths with ice while giving a particularly nasty drug. The theory was that by reducing the circulation, less chemo went to the delicate mucous membranes in the mouth, and fewer sores resulted. When I went to Moffitt in 2006 for my first transplant, they'd never heard of it but were willing to try. I wound up with some pretty bad sores, but maybe not as many as other people. Now, based on lots of studies around the world, it's the standard protocol. Tonite, for my 45 minute infusion, I start freezing my mouth 15 minutes ahead, keep it up through the drip, then 5 minutes after. They have modified it somewhat, also using popsicles and italian ice in addition to regular ice chips. I'll close this out with an "as run" report on that.

For posterity, and to continue to bore you, gentle readers, I'm going to post my daily schedule here.  This structure is worked around the every four hour vital sign checks, the morning wave of visitors after 7:30 morning shift change, and the evening wave after 7:30pm shift change. Chemo happens around 9pm. The middle of the day, from about 10am through 7pm, is pretty much my free time. In my own way, I'm trying to structure my personal life while in the hospital to keep mind and body busy, which is why I'm not watching too much TV or movies. These times are variable, between drop in visits from staff, and meal times shifting by maybe 45 minutes, so it's just an example. I'm not REALLY this structured, I just want to be!

7:15 wake up (for the last time!)
7:30 Bible study
8:00 Breakfast
8:30 Walk 1.1 miles
9:00 Shower (quite an event, requiring a large swath of my body to be covered with stick plastic waterproof bandages, special soap for other parts, etc.)
9:30 Work on various writing projects
11:00 Work on cancer business (bills and EOB), taxes, filling out housing grant applications, etc)
12:00 Lunch
12:30 Walk 1.1 miles
1:00 nap
2:00 Writing
3:30 Work emails, more personal business
5:00 Dinner, watch TV or a movie
6:00 Walk 1.1 miles
7:00 Work on blogs while watching TV
8:00 Relax (I really take breaks all day long, I'm not the robot this makes it seem)
9:00 Chemo
10:00 Bed
Midnight, 4am - vitals and labs

This post goes back to last night's, where taking care of my own body, treatment, and health trumps all. That includes feeling productive while I'm cooped up, so my mind and body don't vegetate. Remember, this one time, it's not about just finishing. It's about winning the whole thing. Like it says in the header: keeping focused on a goal, applying overwhelming force, and not getting distracted.

Day -1: Wednesday, February 18

Runners, and I assume other athletes, are very familiar with "The Wall." It's a physical and mental barrier you hit, where you either push through or quit. During 5K's I usually hit a small wall about 1.5 miles, and a huge one about 2.5. Well, yesterday I hit the chemo wall, and it fell on me.

I had a bad night, with little sleep due to the very late chemo and a whole bunch of  required "wake ups" for IV's and etc. Had a huge headache all day, almost what I imagine a migraine might be like. I was sensitive to light, and pressure. As the day wore on, I got more and more nauseous. By late afternoon I basically had a bad case of stomach flu. Not actually the flu, just a comparable set of "events." We tried different nausea meds with little success. Finally around bedtime, I managed some ginger ale and crackers. So much for my "day of rest."

As a result, I only did 2 miles instead of 3, and almost no other work. I did manage to stay out of bed most of the day, except for an hour's nap.

A New Venue

 

“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

I'd like to announce that I've been blessed with another way to share the message of this ministry. I'm now affiliated with CURE Magazine, a world wide publication found in every oncologist's office. They have asked me to share my transplant experience through a blog on their site. I am extremely honored to be part of their impressive cast of contributors.

I will share a more personal story here, on this site, while posting on the CURE site a more formal view of events, along with the kind of information and advice I share here.

To bring up a rather sensitive subject, many of you have asked about the need for fund raising to help me defray expenses not covered by my (very generous) company medical benefit. The CURE opportunity helps me resolve my reluctance to accept help, when so many others have such greater need, due to their poor or non-existent medical coverage. My blog is a paid position, with reimbursement based on the number of page views. If you would kindly share the link to that blog with family, friends, and via social media, it will accomplish two mutually beneficial goals. First, helping me spread the word that cancer can be beaten, with dignity and humor, and through being an informed patient. Second, it will help us with lodging and travel expenses, which are manageable but not trivial.

My first post on CURE's website should be up in a day or so. I encourage you to visit and share.

Kevin's CURE blog

Kevin

Waiting Redux

 

“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

It's been a busy month in Kevin Land. And the pace is about to increase!

First, though, I encourage you to read, or re-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.

After my daughter Morgan's wedding on New Year's Eve, we had a whole month before my transplant, scheduled for the first week of February (essentially, now). That month evaporated quickly! A trip to Georgia for our grandson's first birthday; most of a week of tests, a day of consulting, and all of a sudden, BAM, it was The Day. Except, not so much.

To get ready for a transplant, in a weird sort of paradox, you have to prove how healthy you are! So the third week of January I went through three days of testing, sort of Moffitt's version of Navy Seal Hell Week. Since I've done all this before, I knew what to expect. They set you up for 6-7 appointments per day, for three days. The opening shot is blood work. Now, cancer patients do blood work, a lot. I've tried to count the number of blood tests I've had over the last nine years, and it's a hopeless task. Maybe 800? Usually they draw 3 or 4 tubes. Well, the pre transplant experience is what they call a "mega panel." The term "mega" usually denotes something cool. Here it means 20 tubes. For at least 5 minutes, the tech filled test tubes. Not like a pint, when you donate, but somehow a lot more impressive seeing a foot and a half of tubes racked up.

What follows are tests for your heart (MUGA, or Multigated Aquisition scan); lungs (pulmonary functions, like the worlds worst breathalyzer test in an airtight phone booth); full body CT; a psych workup including memory, reasoning, and spatial baselines; financial, social, research, and treatment counseling; and probably some things I've forgotten. Results? I'm so stinkin' healthy it's a crime to wreck it treating the cancer. All joking aside, the healthier you are going in, the better your chances of survival. So my year of taking the stairs, doing heavy yard work, doing occasional races, and (kind of) improving my diet has paid off.

I found out about my donor. (Spoiler alert. Things happened). She is a 50 year old German mother, with a different blood type than mine. Big surprise. Since it's a transplant, you can change types. The "blood organ" doesn't really bother the rest of the body. Plus, I'd have type XX blood in an XY body. So paternity tests, Olympic trials, and certain other genetic events are off the table for me.

I was scheduled to go to Moffitt Tuesday night (now, as I write this). On Monday, at 4:15 I was driving home from work, when my transplant doc called. At 3, a new donor had been registered that was a better match for me. So we decided to delay things for 2-3 weeks while the new donor is brought on board. This is a younger, 35 year old man. For technical reasons I don't have time to go through here, male plus younger equals lower risk.

Since we'd already gone through all the mental and physical and family and friend and work preparations, it was a bucket of cold water to change plans in an hour. But, a lower risk transplant is worth a short wait.

So now, we re-wait.

Sometimes, even Napoleon had to wait for things to firm up!

Kevin