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.