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

Taking The Big Ride

 

“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

In the months since my last post, not a lot happened, cancer-wise, for most of them. A lot has changed lately, so I thought it was time to update my extensive fan base of nearly seven people.

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.

This post might be rather long, so here's a Table of Contents so you can decide what to read, if not all.

• Header
• Introduction (not labelled as such, figure it out!)
• Table of Contents (thus displaying my position on the style guide nerd's conundrum: Do you list the Table of Contents in the Table of Contents? This has occupied WAY to much of my internal thought energy, I'm resolving it here.)
• Kevin's Latest Big News
• Commercial
• The Plain Facts
• Diversion
• The Raw Face of Courage
• Going Forward

Kevin's Latest Big News

 I've been fighting this disease, Mantle Cell Lymphoma, for over nine years. 17 months of intense treatment, 5 years of remission, 2 years of less intense but still aggressive treatment. And I've done very well with it. Through the remission I did 5K's and micro-tri's. Worked some tough and fulfilling jobs, with lots of overtime and stress. I stood down from running during the first part of my treatments after relapse, but in October 2013 I set a goal of doing a 5K a month for the duration. Well, I did 8 races (including an 8K, and a 1 miler) in the 13 months since. While I wish I'd done more, I feel pretty good about this. The 1 miler was the Super Caleb race on December 20. I'd planned to train for it, and really turn in a great 5K time. Best laid plans, etc, and I neither trained for it nor ran it. A severe cold knocked me down, so I jogged the 1 mile leg instead.

Last month, one of my indirect blood markers was up, and had shown a slight increase for several months. So, worrying while not worrying, I went through another cycle of scan - wait - relief when it all came out OK, a very clean scan.


But - Clue alert - something is changing after January. The medicine I've been on since  December 2013, Ibrutinib, according to the Good Doctor Shah, has been regularly shown to lose effectiveness after 12 to 18 months. After that, there's not a lot in the pipeline for me, until 2-3 years out. I could continue my the strategy I started in 2005, pushing the disease 18 months ahead with treatments to manage the disease but not cure it. And, there are some ways that I might continue this approach. But, instead, and this is The Big News, the rhythm of my life and family is aligning with the gap in development of new medications so that this is time to Take Vienna. (see header). The only known possible cure for MCL is an allogeneic bone marrow transplant, also called a donor transplant. When we checked in 2005, and again in 2013, there were some "9 out of 10" matches out there, that my transplant doc (Dr. Ayala, who did my autologous BMT in 2006) felt were acceptable. Once I made the decision to go forward for sure, they searched again, and found a 10 out of 10 match, that had just registered in August!

Commercial

<<This commercial break brought to you by the National Marrow Donor Program>>

I get asked ALL the time: "Kevin, what can I do for you?" Answer: register as a potential donor. It's easy, the odds of you getting called are very low (1 in 500), and the procedure isn't NEARLY as scary as it sounds. They mail you a cheek swab kit (similar to the DNA kits used now). You send it in. Done. In the very unlikely event you are a match, for my type of cancer you don't actually donate marrow, which sounds icky and painful (it really isn't, done right, but that's moot.) You donate, and I receive, Peripheral Stem Cells. It's quite similar to donating platelets. You get some shots to boost your blood cell production. You get hooked up to machine, similar to donating blood, and they filter the stem cells out and return the larger cells and fluid back to you. No need to even drink the orange juice! Somewhere out there in the world, last August, some person signed up and BAM! I have a donor. You could save a life too.


<<End of commercial>>

The Plain Facts
.
This procedure isn't risk free. Back in 2006, I had to decide on an autologous (self) or allogeneic (donor) transplant. Then, having a young family (4 kids 8-18), and life insurance & 401K savings at a middle-ish level, plus a lot of new medicines in the pipeline, we decided on the very low risk self transplant, knowing the chances of a cure were low but the chance of remission and new drugs were high,. I had a good long remission before relapsing in 2012, and now the procedure is safer (although the numbers aren't of course as high we'd like). There's also a gap in what's in the pipeline, with The Next Big Thing a couple of years out.

This procedure means a month in isolation at Moffitt, like last time. Afterwards, we have to stay in the area in a hotel, apartment, or Hope Lodge for two months. Then, home recovery for 3 to 6 months more, for a total of 6-9 months. That's if things go well. There's also a chance things will go down another road, and I'll have a significant case of Graft vs. Host disease, and could be out of commission for an extended time. We're following the "hope for the best, plan for the worst" policy on that one.

We have a pretty solid plan for the 6-8 month version of events. Our wonderful adult "children" are going to pitch in and help. But even with that, and, since I know you'll ask, there are things we will still need more help on. And, like last time, I've gotten my pride backed off to a point I'll accept help. It's hard for me to admit I can't do it all. And it's really hard to accept help, even though it's freely given and I certainly like to help other people! Will make our needs known when we run across them.

Also, the offer I made in the post linked above stands. As this blog shows, I'm very "out" about my disease. I also have a calling for public speaking. So if your church or civic group, business, or other organization would like to hear a fundamentally disturbing, uplifting, life saving talk, let me know. I have seen so many lives changed by this awful disease, both for the bad and the good.

Diversion

By now, I'm sure you've asked yourself, "Hey, Self. What's up with the title of this post?" To satisfy your Self, tell it this: "Self, one of Kevin's favorite old time shows was Northern Exposure. One of the supporting roles was played by a great character actor, Barry Corbin, as a former astronaut with a huge ego. He referred to "The Big Ride" when talking about his space launches. ("They've got a gallery where they pin up all the guys that took the big ride.")" I've worked with many astronauts, and have never heard any of them use that term, but it's stuck with me as a phrase for describing a major life adventure. Now you know.


The Raw Face of Courage

In my post last Veteran's day,  The Morning Face of Courage, I talk about the incredible resiliency of the human spirit. Since then, I've sure seen a lot more of it. Watching Super Caleb's family deal with cancer in their 3 year old son, and seeing that incredible boy face his illness without understanding, but with raw spirit, courage, joy, and grit, I've learned a lot more about the subject. As for me, there are two times in my month, that I have to dig down deep and find my own reservoir.

The first is my monthly, five hour ride in the chemo chair. It's a routine, I've done this maybe 36 times, but when I climb out of my car in the parking lot at the cancer center, with my lunchbox, audio equipment, books, and list of questions for the doc, I have to stand there for a minute and make my foot take the first step. Usually a 10-15 second process.

The second is when I'm doing a 5K. By now, like chemo rides, I've also done about three dozen runs in my life, so I know my pace, rhythm, signs that I'm ahead or behind my body, etc. I also know that at mile 1.5, and around 2.3, I hit the wall. It's just me, the pavement, the heat, my gasping and narrowing vision, and That Little Voice that says "go ahead, just start walking. You're only doing this to finish, and everyone already thinks you're brave for being a cancer patient running anyhow." That's when I have to really draw up the vision of my last transplant. Lying in a bed, huddled in a hospital recliner, too tired and sick to suit up and take my daily walk all the way around the nurse's station. I picture how I'll feel when I hit the chute, and push into my characteristic "kick," finishing with arms up, accelerating to the finish. This means, of course, a near collapse 1.2345" after the finish line. I think about the folks I've met in the chemo room, listened to their stories of unimaginable travail, seen their actions, and heard their words. Then, I call up one of my "standard" Bible verses, 2 Timothy 4, verse 7: "I have fought the good fight, I have finished the race, I have kept the faith." And, somehow, every time, I am able to push through the wall and just be miserable for a while. You see, I hate running with a burning passion. But, I'm comfortable in my pace and like the idea of being a runner a lot. So I do it because, (famous last words), it's good for me. And not just physically.

It's not just about finishing. I could walk 3 miles and finish. It's about finishing right.  Finishing with style. Conquering the race. That's why I save a bit of energy for the finish. Technically, runners should manage their energy to exactly hit "zero" at the finish, leaving it all on the course. I've made a decision that finishing right is better than finishing fast.

This photo, courtesy of my friend Joe Jacoby, was taken when I finished my first micro triathlon in 2008, two years after my auto transplant. I did a 100 yard swim, 4 mile bike ride, and 2 mile swim. There's a great article on page 7 here:  The Running Zone Newsletter. I was so slow in the pool, they had to hold the next wave and I had to be helped out of the pool. I fell down a muddy slope into the bike area, but after that managed to chug through the rest. And, as you can see, finished with my version of style. And then I fell down, gasping, to the great concern of a couple of paramedics. They didn't know what I know, sometimes the cost of finishing with style is pretty high.

Going Forward

In the third week of January, I go over to Moffitt for a 3 day long workup, in final preparation for the transplant. The first week of February begins a month in an isolation room, where the transplant happens. March and April will be spent living close to the hospital, where they will keep close tabs on my. At the end of April, I'll either have Graft vs. Host disease, or I won't. If I don't, I come back home and recuperate for three more months before I can go back to work. If I do, then we're into the "see what happens" mode to decide when I'm well enough to live at home and return to work.

During my stay in Tampa, both in the hospital and as an outpatient, I'm free to have visitors. If you happen to be in the area, I'd love to see any of you. Please call ahead, though, in case I'm having a bad day, or have a procedure scheduled or something. If you're actively sick, we'd best keep it to a phone call. If you are well, there will be a few precautions, but none too burdensome.

As I said above, I'm sure we will need help over the springtime. As things come up, we'll reach out to you all and I know that, knowing you all, things will happen.

On New Year's Eve, my younger daughter married a wonderful man, following in her older sister's high heels (2011) and for the second time since contracting this horrid disease, I  was the Father of the Bride, joyously dancing at a wedding. Thanks to my family, the staff at Space Coast Cancer Center, Moffitt, my co-workers, friends, and neighbors, I'm around to celebrate.

Here we go. The Big Ride. I'll be planning how to finish this one with style!



Kevin

Ninth Verse, Same As The First

 

“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

Wow. It's been five months since my last post. Not that there hasn't been a lot going on, but rather a lot of busyness and events, so much that I kind of lost focus on this outreach.

So, this post will be a lot of catching up. Since these notes are certain to get collected together sometime into as yet-to-be-named sequel to Taking Vienna, I really need to catch up. In November, the FDA released the drug Ibrutinib after hugely successful, although quite limited, clinical trials. Rather than being traditional chemo ("poison"), or an immunotherapy, (like the Rituxan I've been taking so long), this one is a, wait for it, a Bruton's Tyrosine Kinase (BTK) inhibitor. I was going to link to the Wikipedia article on this, but the first sentence is:

"Bruton's tyrosine kinase (abbreviated Btk or BTK) is a type of kinase enzyme implicated in the primary immunodeficiency disease X-linked agammaglobulinemia (Bruton's agammaglobulinemia)."

Once you understand this sentence, you may go on to the advanced material. Let's just say that while chemo kills stuff, and immunotherapy tells your body to kill stuff, inhibiting BTK somehow messes with the cancer cells ability to divide, basically making cancer sterile. But I doubt many medical schools use this explanation.

I started Ibrutinib right after Christmas, taking 4 pills daily. I also get Rituxan infusions once a month, in a rather skill based decision by my docs. Meaning there's not a lot (eg none) of clinical data on this combo. I'm one of 6 patients my Moffitt doc is using Iburtinib on, and not all have been successful. As for me, I responded quickly, well ahead of the "norm," for the value of norm where only 111 patients were in the study. The second month I took it, CT scan showed the dastardly invader was in full retreat, almost all lymph nodes back to my "new normal" size. Best of all, not many side effects. Fatigue is the #1, typical side effect. I get pretty tired by the end of the day, usually wanting a nap when I come home from work.

Going back, in my last post I mentioned having a node removed and genetic testing done. It was worth it because it ruled out one of the three treatments I was considering. Unfortunately, it showed my cancer had moved from an indolent (low growth rate) mode into a more aggressive (blastoid) variety, requiring a more aggressive treatment.

But, I'm able to work full time plus; have all my normal family activities, and even have done a race every month since I started it, mostly 5K but I did stretch out and do my first 8K ever. The Rituxan weirds me out a bit, like it always has, messing up my sleep for three or four days. Probably not the actual Rituxan, but as preps I get: IV benadryl making me sleepy, IV dexamethasone steroids to make me wired, anti nausea medicine to make me detached, and a couple of tylenol. So being sleepy wired and detached is a rather 1960's like state of mind.

For those of you keeping score on the cost of cancer, especially the cutting edge stuff I get, Ibrutinib costs $12,000 a month, or about $400 a day. Rituxan is also around $12,000 a pop. Thanks to the concept of shared risk through insurance, I pay a LOT less than that! So if you are thinking about going naked without insurance, keep me in mind. Roughly $1.5M to date. And thanks to all you healthy people out there keeping me alive through premiums. One sign of a civilized society is working together to help everyone, and I hugely appreciate it. I try to repay my debt in many ways, and this blog, along with my role as a "second responder" to new cancer patients is part of that.

A couple of weeks ago, however, I had a little adventure, a deja vu from 2006. I was at work, suddenly started getting chilled. I thought I'd ride it out, then remembered one of Kevin's Top Ten Pieces Of Advice For New Cancer Patients: Be A Hypochondriac!  So I went to the cancer center and had blood drawn. By then I was feeling OK again. The Nurse Practitioner came to give me my results, a very unusual procedure. Then she uttered the words that will become another of in my repertoire of cancer stories: "Kevin, I've been a Nurse Practitioner for 25 years, and you are the first patient I've ever had with a blood count of zero."

That's right, campers. Nil, nada, zip, zed, bupkes. Not one stinking white cell floating around anywhere. Which, in layman's terms, sucks like a shop vac. It means you have no ability to fight infection. And, since I had a fever, they were a bit worried. Go to the ER, do not pass go, etc. I spent four fun filled days in the Parrish Hilton in isolation, feeling great and getting lots of visits from masked family and friends, ordering from room service (truly great burgers, legendary bad pasta). After a few days of neupogen shots, things came around, and I went home.  

All told, this regime seems to be working. Doc says it should be good for 12-18 months, then we see what's next.

Oh, the title of this posting? Well, one day I was sitting around being legally and expensively zonked, and I counted up my treatments. It's been a ride, I'll say that. Nine years, nine major treatments. Just for fun, and posterity, I'll list them.

2005-2007
CHOP-R (chemo & immunotherapy)
Zevalyn (radioactive immunotherapy)
Autologous bone marrow transplant (chemo)
Rituxan

2012-present
Bendamustine/Rituxan (sort of chemo & immunotherapy)
Rituxan
Prednisone (steroid therapy)
Radiation
Ibrutinib/Rituxan (BTK inhibitor & immunotherapy)

I realize I have done this list before, but counting blessings needs to be done often. Over those nine years, looking into a three year prognosis, I've seen one daughter married to a great man & have our first grandchild, as well as graduate college and go into grad school; one son graduate high school and college; my other daughter graduate high school and well into college, engage to another great man, and I was there to help my wife take care of her when she was horribly injured in an accident; our other son graduate from high school; celebrate our 25th anniversary; and in a couple of weeks, our 30th. I've changed jobs a couple of times, each better than the last. Enjoyed time with family and friends, grown and learned and helped others, and it's been worth every infusion, pill, and surgery.


I encourage you to read one other post, The Most Important Thing I've Ever Written.

Thanks for reading!

KB

 

 

The Fork In The Road

 

“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

"Turn left if you find a fork in the road" - Kermit the Frog

"Life is what happens to your while you're making other plans" - Allen Saunders & John Lennon

Before going further in today's post, I highly recommend you watch this video.

Now, two things have happened. You have a major ear worm, that can only be removed by replacing with Barney the Dinosaur's "This is the song that never ends." And, I've successfully set up today's post.

Medical Stuff

This summer, I had 24 radiation treatments to resolve a mass in my groin. The theory was, since I was in remission everywhere else, killing that one spot would fix me for a year or two. I finished radiation in early August, had a CT in early September that looked great, and had a CT/PET in November (90 days after radiation) to confirm remission. But .... (there's ALWAYS a butt) ... no remission. True, the radiated nodes were dead, but in both groin and armpits there were lots of happy little nodes just growing away. (Channeling Bob Ross there, sorry.) So that pretty much sucked like a 10 horse shop vac.

Went over to Moffitt, saw Dr. Shah, he laid out three possible treatments. One is a chemo; Bendamustine plus Cytarabine.  I had Bendamustine with Rituxan in the fall of 2012, it beat the disease back but not all the way.

The second choice is a really good one, Lenalidomide plus Rituxan. This one is an immunomodulator rather than a straight poison. It has a high response rate

The third, which I consider pretty much literally a Godsend (see below) is ibrutinib. Back in the spring, Dr. Shah told me he thought it was The Bomb, and had been pulled from Phase 1 trials since it was just so darned good. They put it on FDA fast track, which is medical shorthand for "months rather than years." Even with the shutdown, they did it good. On November 13, it was approved. My PET results came in on November 14. Thus the "God" reference.

I had also been waiting for years for genetic testing to become affordable (see my book Taking Vienna, which discusses this in 2006 as the up and coming thing.) Late last year it still was on the patient, not insurance, and cost thousands. Well, now, it's "standard of care." That's medical shorthand for "insurance pays." The place that does it is FoundationOne, and their web site says "available December 16." Well, that's for open patient access. Going through a NCCI like Moffitt, it's available now. So on December 6, last Friday, I had a large node removed from my left armpit for testing both by FoundationOne and The Back Room at Moffitt (I am part of a clinical trial where I donate icky stuff to medical lab research nerds.)

That node was not gone any too soon. Just in the two weeks between getting my PET results and the surgery, it grew to golf ball size, was really sore, and messed with my arm movement and worse, ability to sleep on my left side. Taking it out just to fix that would be pretty stupid, but since one had to go for testing anyway, that bad boy was outta there.

The testing should help us make a good treatment decision, plus do something I've always wanted: positively confirm the exact genetic makeup of my cancer. I really believe that in a few years, rather than getting a strep swap, your kids will get a quick genetic test to see which antibiotic will kill their bug. Personalized medicine, or Genomic medicine, or Targeted therapy, (the name is still settling out) will be our future.

So About That Fork?

 Sorry, sometimes I feel like the Fozzie Bear of blog writers. Wocka wocka. The other quote at the top, sort of reflects the result of my treatment strategy - kick it down the road a few years, let the science get ahead of my disease. Which has worked PD well. 8 years so far, on a disease that was fatal at 3 years, then 5, then 8. Now I am finding people with 12 years under their belts. But, The Good Doc Shah warned me this time, the strategy is wearing thin. I've been holding in reserve the Nuclear Option, an allogeneic (donor) transplant. This one has odds I'm not in love with. So a year or three from now, while I'm in remission (next one or the one after) it will be really, truly, decision time. That's why I'm so hot on genetic testing to pick my treatment plan, because, like many things in life, it matters what order you do them in. Just like a fork in the road, the decision I make in a couple of weeks will take me down a road to somewhere. No sign, just a fork.

Life Happens

I've written before about the duality of living with cancer.  You live a normal life, going to work, soccer games, band concerts, walking the dog, buying cars. Planning for retirement, whether to keep or sell the house, travel or vegetate, buying groceries and planning Christmas. In parallel, you schedule treatments around commitments, reprioritize purchases, replan trips, and hold off decisions until you get to the fork.

Since I've had time lately to sit in waiting rooms, I've built a scorecard on what has happened in both lives while I was making other plans. I've had 8 major treatments, 13 surgeries or procedures that required anesthesia, had 28 rides in the chemo chair and 24 on the radiation table, become best friends with the gang in the front office of the cancer center, and lived way longer than I was supposed to, if you believe conventional medical wisdom. Which I don't.

On the other hand, I've watched all four of my kids become adults. One is married and bringing our first grandchild next month. Another is engaged. All four are in various stages of college. I've been to hundreds of soccer games and band concerts, choir concerts, awards programs, shows, and plays. I've had 8 more Thanksgivings and Christmases. Went from my 21st wedding anniversary to my 29th. Went from Shuttle to Station to Orion to my new job on the big booster. Met dozens of new friends, lost a few old ones, and reconnected with family.

And become a cancer expert.

So, once I select a tine in the fork, we'll head down another road, to see what lies ahead. The adventure continues!

Kevin

 

How My Cancer Might Save Your Life

 

“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

My name is Kevin Berry, and I am the victim of a rare cancer called Mantle Cell Lymphoma. About 4% of cancers are lymphomas, and about 4% of those are MCL. When I was diagnosed in 2005, the current treatment gave me about a 50/50 chance of making it 3 years before relapse, little certainty of effective re-treatment, and a significantly shortened life span. Thanks to receiving the best medical care in the world, backed by top notch benefits, keeping right on the edge of medical science, by the time I finished treatment 17 months later, those 50/50 odds were out to 5 years with some hope of re-treatment. When I did relapse in 2012, at 7 years, the 50/50 spot was actually ahead of me. But, more importantly, I had several options for getting back in remission. As of today, I am almost back in remission and at least two exciting new treatments have the possibility of keeping me in long term remission, meaning I can foresee living into the "normal" range for American males.

I give formal and informal talks about cancer survivorship, being an effective patient and advocate, and the role of God versus disease. With depressing regularity, I also serve as the "third responder" to newly diagnosed patients and their loved ones. The book about my first adventure, "Taking Vienna," has been downloaded thousands of times and emailed countless others. This blog is the chronicle of my current endeavors.

There is a formula to public presentations about subjects like cancer. First, you shock the audience with your story. Then you give them information they need to know. You pressure them, undoubtedly incurring guilt, into realizing they need to change their life. Finally, you uplift and encourage them that it's possible. This article is my attempt to distill 8 years of learning, introspection, discussion, research, analysis, and editing into a simple, clear presentation. Disclaimer: virtually nothing that follows can be 100% backed up with scientific data. It isn't meant to be. I am the original science nerd, and the first thing a true scientist learns is that discovery happens by taking odd pieces that don't fit, or are not quite provable, and assembling them into a coherent theory. This is Kevin Berry's Theory Of How To Minimize Your Chances Of Getting Cancer, And If You Do Get It, How To Increase Your Odds Of Beating It. (I need a slightly sexier name, and maybe a pronounceable acronym. That will come to me, I'm sure, in a year or seven.)

How I Got Cancer

 My risk factors were as high as they come. For most of my childhood, I lived with parents who smoked at home and in cars. I spent many years in Texas City, Texas, a chemical plant and refinery town. The air stank, flames lit the night, and when you washed your car you had to pull it into the garage to dry it, before it recoated with fallout. My childhood friend lived at the corner of Texas Avenue and Bay Street, in the heart of the industrial district. We swam and fished in Galveston Bay, eating the fish and crabs. There, and also in West Florida, we treated our yards and played in waste gypsum from the phosphate mines, now classified as radioactive hazardous waste.

In California, my relatives farmed. My uncle was an Ortho rep. His son, my age, had Hodgkin's Lymphoma as a boy. I worked in the orchards and fields, we dusted our garden with powdered bug poison, and hunted for food animals that ate in the seed bean fields, treated for weeds and insects.

On top of that I was an alcoholic throughout my teenage and young adult years.

In 2003, while working on the Shuttle Columbia debris recovery, working over 400 hours in the first month, I contracted a severe infection, Erysipelas , a serious staph infection. While it is fairly well known that severe infections can trigger some types of cancer, it is also possible that cancer was already present, and coupled with fatigue, allowed the infection. Either way, there is some scientific and I have much anecdotal evidence that severe infections may trigger cancer.

How You Might Get Cancer, or Not 

We are bombarded with studies, articles, advertisements, books and memes about what causes, and what prevents, cancer. Chocolate, red wine, broccoli, and certain expensive berry juices cure it. Red meat, plastic bottles, foam food containers, and practically everything not made of all natural materials cause it. Unless the natural materials emit radon, radiation, or bad thoughts. As you'll see below, if I was a betting man, the question isn't "Might" so much as "When." For you or a close loved one.

The first time I fought The Beast, many well intentioned people helped me with information about lifestyle changes. Our family has always believed in nutrition and health, and we probably had a cleaner lifestyle than most Americans. But when faced with fatal cancer, I chose to go mainstream, with great results. Before, I ran occasional 5K races, worked hard, and sort of managed my weight. After, I helped organize and did a couple of mini-tri's; did some 5K's, and pretty much went "back to normal" with my diet. I was just glad to be over it.

Then I relapsed. And went down the science road again, while (partly consciously) deciding "what the hell. I have it again. I'm going to just eat the damned cheeseburgers and fries. What's it going to do, give me cancer?" Then, when it began to look like there was actually hope of beating it, medium to long term, and thanks to encouragement from my incredible wife, I had a sort of epiphany. If I got in remission, AND cleaned up my diet, I could maybe swing the odds a little more in my direction. And with some deep and true hope of living to 65, or 70, or maybe even longer, I was motivated. So, towards the end of this article, are a clear, easy list of things you can do to change the odds somewhat in your direction. The best part: they aren't trendy, they make sense in all contexts (healthy living or beating cancer or heart disease or having more energy or being more spiritual, etc), and they are easy.

Now For The Guilt Part 

I need to make it clear I'm not comfortable with guilt. Giving it, I mean. Having it, I do. Well. Very well. Hey, I'm bred from a long line of solid Midwestern Farm Stock, where both genetically and culturally, guilt has been refined into a Family Value. But I prayed, and meditated, and truly feel I have a one time, God Granted, dispensation. Even though I'm a Methodist. So just this once, I'm going to admit, I don't cause your guilt. You do. Deal with it. (Please!)                 

Do you: Drink, smoke, have some extra weight, exercise too little, manage stress poorly, skip checkups, eat processed foods, drink milk, like sugar, eat and drink foods with preservatives, go outside, use lawn care products, get too little sleep, worry too much, or are unhappy?

Then, if you are male, you have a 1 in 2 chance of getting cancer, and a 1 in 4 chance of dying from it. Women? 1 in 3; 1 in 5.  Actual Science

 Yeah, that's right. 1 in 2 or 1 in 3.


 What if you follow my tips below? What are my odds?

No clue. But better. Your Mileage May Vary. But I know which way the variance will be. So do you.


KBTOHTMYCOGC, AIYDGI, HTIYOOBI  (made you look back, didn't I? I really do need a better name for this)


1. Get the checkups. All of them. Regularly.
2. Change your diet and lifestyle. Just a little bit.
3. Learn the difference between happiness and joy

That's it.

Checkups

My cancer was found during a yearly visit to my allergist to get a prescription renewed. Need to be motivated? Let me give you two ways.

Easy Way: Visit your family doctor. If you don't have one, get one. Have them list the things you need done, including getting an annual checkup. Take that list, get them done, and present it to your most loved one on their birthday. Repeat annually. Here's a start (not all are annual tests, but risk factors and recommendations change):

Annual Checkup
Chest X ray
Mammogram
Pap Smear
Prostate Exam
Colonoscopy
Dermotologist
Dentist
Eye Doctor

Hard Way: Men, don't like the prostate exam? Women, don't like mammograms? I can find you 1,000 people, by name, who would have one daily rather than what they are going through. I personally would take two colonoscopies over a ride in the chemo chair any time. Or seven.

Diet and Lifestyle

I'm not talking a new wave, odd, eat only weird stuff change. In my opinion, if you can change your diet by 25%, you will make HUGE strides towards fighting off cancer and living a more healthy lifestyle. Let's look at that. Say you, like most of us, eat 4 times a day. Three meals and a snack. 28 times a week. Start small and change just one of those 28 the first week, another the second, and in 7 weeks you'll meet the goal.

What change? Easy ones. Say you and buddy go to Fast Food Paradise for lunch. Instead of the Meal Deal, each get the burger. But split a small fry. You'll get enough. Diet soda? Sure. But fill it FULL of ice. If they have the little "soda only" button, put in a bit. Refill? Add more ice, more plain soda, don't top up the foam. You'll wind up drinking a whole less cup each visit.

Portion size. Don't put the food on the table. Leave it in the kitchen. Take a smaller than normal portion, and when done, sit and chat a bit. If you really want more, get up, walk over, take a spoonful, sit back down. Repeat.

Easiest of all? Antioxidants. Take a look at the list of 20 highest anti-oxidant foods. (This is what hooked me).  Good Stuff Good For You  Beans and blueberries. Really. No matter which list you look at, I happen to like almost ALL of it. I add a cup of blueberries to my morning cereal (see below); I eat beans all the time anyway, I love nuts. Artichoke Hearts? Great for you.               

Harder but worth it. Organic foods. You can't do it all, pick your battles and financial impact. Milk must be done. You, and your kids, don't need any more hormones. Produce? We focus on the leafy vegetables; and try to also pick canned organic where possible. It costs, though.

Processed foods? That's where I scored my biggest percentage gain. I ALWAYS ate some sort of less sugared cereal, but still with some sugar, preservatives, etc. Now? Breakfast is shredded wheat. Read the ingredients. Wheat. Just that. I add in frozen or fresh fruit, sprinkle on a bit of stevia, skim organic milk, and eat till I burst. There are 5 of my 28 meals scored. Some of my snacks were always snack mix, I love it. Now I use lots of nuts, dried cranberries, maybe some organic pretzels. Low butter popcorn. And yes, sometimes (often) I eat ice cream. I'm switching to organic and using a little bowl.

Cut down on the amount of meat, especially red meat. Again, you're only looking for a 25% change, not a radical diet. Go organic on the meat, red or white. Plus the price will automatically downsize your intake.

Exercise is easy to increase a little bit, if you don't have a physical impairment. At the store, park far away instead of fighting for a close spot. You say you never have time for a walk, but you always seem to have time for the store. Add 5 minutes by parking out of the fray. Take the stairs at work, at least 2-3 floors up. ALWAYS take stairs down, up to 6 flights. Gravity works.

Motivation time. Remember that "your guilt is yours" deal. I'm cashing it in. I have my own version of the "Scared Straight" program. I've had cancer for 8 years. I've had 28 days in the chemo chair so far, 13 surgeries or procedures requiring anesthesia (for a "non-operative type cancer!); am just finishing up 24 radiation sessions, had a 6 month bone marrow transplant requiring a month in an isolation room, 9 different treatment types so far, and the pain and suffering of my family cannot be imagined. "I don't like to get blood drawn because needles scare me." - heard it. Go find any diabetic, or any cancer patient (one or the other lives on your block) and ask them about needles. "I don't have time for checkups. I hate doctors anyway" - heard it. "You just get sick at the doctor around all those sick people" - heard it. You cannot make an excuse I can't top.

So, if you live within driving distance of me, come on over the fourth Monday of every other month. You and I are going to share a ride on the Chemo Express. If you live farther away, call your local "Infusion Center" and ask to come in and observe. I mean this sincerely and honestly. Do it.

I absolutely guarantee two things, or double your time back in some sort of service from me: You will change your life, and you will begin to understand joy.

Chemo rooms are the most depressing places on earth. Chemo rooms are the most joyful places on earth. You come share any of my 6 hour sessions, and you will see beat up, physically broken, sick, odd looking people. There will be noises and smells and groans. There will be laughter, jokes, personal questions, personal answers, courage in 55 gallon drums, incredibly nice people, and you will see that you don't have a clue what joy is.

Happiness versus Joy

This is on you. I will give you a few clues about what gives me joy. I just added #4 a few weeks ago.

Rainbows - I love them. Always have. Why? Well, first off, at critical times in my life, like when my father died, and during major cancer milestones, one always "happens" to appear. My kids know of my love so much they run and get me, or call me, when they see one. I am The Rainbow Guy. Second, they have no reason. None. Look, I said I'm a science nerd. I know the mechanics. But every other item of beauty in nature, whether you believe in evolution or creation or both, has an ecological function assisted by the beauty. Rainbows have none. They are just pure beauty as a byproduct of physics.

Butterflies - Can't tell you why. I mean, their beauty does have a function. But to me, they are just moving flowers. I never pass one by. The 3 minutes I stand and watch one is exactly the same, and totally different, than rainbow watching.

Caramel Ice Cream Sundaes - proof that God Loves Us. Perfect mix of flavors. Despite my healthy eating rant above, this is part of the balance of life. I'll eat an extra bowl of blueberries, OK? Also, as part of my cancer counseling, and to everyone for a lifestyle change, I prescribe that three times a month, planned but spontaneously, you go by yourself and sit and eat a sundae. Take yourself on a date. So far, most patients who took this seriously have told me it was the best advice they got. Sometimes it's a root beer float, or a banana split. But McDonalds has a perfectly fine caramel sundae, cheap, and on the way home.

Fireworks - just added this. Meticulously planned, very common, socially acceptable, extremely temporary beauty, in a crowd gathered together to waste thousands of dollars on just looking at pretty stuff blow up. Fireworks are joy.

So that's the story, and the theory, and the motivation. I hope it was worth your time. And, just this once, I hope you feel REALLY guilty.

Kevin

Friday, July 12, 2013

So, How'd That Waiting Thing Work Out?

 

“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

Kevin's Update

ANOTHER long gap in posting, wow! Well, here's what's happened with the waiting game.

Had the Rituxan Maintenance again, this time end of April. No problems, all fine. Late May, went for a long bike ride, soon noticed these large nodes in my "hip joint" (let's just all be adults and call it the groin, eh?) were sore. Kept on being sore. Had another CT, yup they were bigger since the January scan. So the maintenance regime, at best, was only slowing things down. Definitely not regressing.

Went over to Moffitt and saw Dr. Shah again. He suggested radiation to knock those nodes down. Radiation isn't a cure for MCL, nor often done, actually. Rather common in specific locations for more common lymphoma, though. We discussed what other options I have, and what comes next.

Dealing with these major cancer geek doctors, who truly have a passion to cure this evil, can be fun if you have your own head in the right place. Dr. Shah is as caring and compassionate a healer as you'll find anywhere. But, when you get him talking disease rather than patient, he's a real hoot. "What I like about your MCL," he begins ... Basically it responds to treatment, and my bone marrow must be made of silicon or something because it bounces back like crazy from every odd & strange thing its been subjected to.

So we had a bunch of choices. First, the Ibrutinib magic potion continues to be fast tracked by FDA as a "breakthrough drug," doing wonders for MCL patients Latest Press Release .  Won't be out until September, earliest, though Second, there is an oral drug, PD 0332991, which combined with an old chemo, Velcade, that shows great promise. Clinical Trial.  Moffitt is doing this trial, unfortunately, it means driving over there twice a week. Which I would do if I needed to, of course. Better choice from a personal standpoint is a Revlimid + Rituxan approach. Lenalidomide Study. This is a thalidomide derivative showing good promise, and I could take it at my home site of SCCC. And, it's not a chemo, but some sort of immune system activator.

Last choice was to continue to watch and wait. I was pretty sure I wanted to do the Revlimid approach, since it was "let's try another drug and I know how to do that." Honestly, the whole radiation thing scared me a bit. Can't say why, but it sure did.

Well, last last choice is to go for the allogeneic transplant I've been kicking down the road for 7 years so far. Dr. Shah wasn't really pushing that one as much, and I still don't like the odds. BUT I will reach an age/stage of cancer where I've waited my way out of that option, so I don't dismiss it from consideration lightly.

I really shrank away from the radiation option (future pun impending). Never had it, always scared of it, not sure why. Believe it or not, I find the whole concept kind of icky. Heck, radiation is what CAUSES cancer! (of course, so do toxic chemicals, but the Lizard Brain is not a Logical Brain).

Which is why thinking, talking, and researching and taking a few days to think is a good idea. I thought about all my cancer buddies who'd had it, still vertical and coherent (except maybe that lawyer buddy, and hey, let's leave those jokes for another day.) I also did what I am trained to do, when faced with a complication decision, and only subjective data. Analyze dispassionately.

• Fact: In January I had clear CT and PET scans except for the nodes in my right groin.
• Fact: In May I had a CT, only those nodes were bigger, no cancer anywhere else
• Choice 1: Use the Revlimid/Rituxan treatment to try to shrink the nodes, eliminate the residual cancer, either go back in remission or stall the growth until next attempt. (60-70% chance of success)
• Choice 2: Take the radiation to eliminate the cancer in those nodes, putting me fully in remission (90+% chance of success)
• Analysis: Why was I wanting to do another type of infusion? Well, because it's familiar, and can be done in Titusville. Why not radiation? Because I don't know the risks and procedures.
• Answer: Duh.

If I can increase the odds of a 1-2 year remission, with high odds (70-80%) that a preventative brand new, sexy hot designer drug is coming, why in the heck wouldn't I do that?

So Sandy and I met with the Radiation Oncology Nurse Practioner, who is one of the best "explainers" I've ever met. And the RO Doc, ditto. Lots of technical information, summarized below.

They do another CT of me, locating each specific squishy icky part. Then they use "What you NASA guys love"; a CAD program to design the path each radiation beam will take to avoid all organs except the nodes. Their machine has 8 beams rather than the standard 4. They say, other than major research hospitals and universities, no local Oncology center in the US probably has this level of machine. What matters is "rads on target" (my term not theirs). So if you are getting "X" amount of rads; this machine lets each path deliver 1/8 of it. So soft tissue in the way gets a 1/8 dose rather than 1/4. Only at the intersection (Let's call that The Gang Hideout Where The Evil Lurks) gets the full dose. THEN they figure out what a lethal dose is, there in that little den of hell where my "last" cancer lives, divide it by the number of safe doses for my good tissue, divide that by 8 paths, and voila - 24 treatments to get the proper sized "bucket 'o' rads" to the node. Radiation accumulates over time, so whether you get it all at once or in eyedropper fulls over time, same effect. If you don't need bowels, bladders, bone marrow, and those sensitive gender specific things we aren't allowed to teach about in school because Adam and Eve were naughty. If you every want to pee, poop, make blood cells, walk, and, uh, you know, again, it's better to do it in 24 daily shots rather than 1 dose!

So I decided to press with radiation. Went in, got the simulation. They draw sharpie X's all over your nether regions. Then they fire up the "hologrid" (yes my Rad Onc Nurse Prac is a trekkie I think). A grid of laser lights makes you into graph paper. They X you, shoot the CT, send you home to get sharpie marks all over your clean white sheets for a week unless you wear Ward Cleaver's pajamas.

A few days later they do another run. You get back on the machine, they run their CAD program (no radiation) as a full dress rehearsal. At that point you get tattooed with little classic green ink dots at each "X". Then you can scrub off what sharpie has ruined your PJ's and bedding. (Not that anyone is upset about than, no sir.)

Last Monday was supposed to be my first treatment. Computer broke. (NOT THE MACHINE they were quick to tell me.) Tuesday, computer broke. Wednesday the magic happened. As expected, quite the anticlimax. You lay there, not moving. A big disc moves around you, stops, buzzes, moves. 8 times, 5 seconds each. Done. Thursday, ditto. In and out in 15 minutes. It's almost scary how invisible and undramatic it is. Radiation can't be smelled, seen, heard, or felt. Which is why they have such strong safety procedures. And a lot of people involved.

And, while they do preserve your modesty as much as possible, lets face it.  A washcloth over That Area of a 55 year old cancer guy isn't exactly like Tarzan's little leopard skin! And no big knife or tooth necklace. But between all the young ladies and men being total professionals, and my 8 years of being a Cancer Test Dummy, there's not a lot of "who cares" left in that area.

When we had realized the Rituxan wasn't holding the line on progression, nodes were still growing, We had a month or so to get to Moffitt, make decisions, etc. Well as that went by, appointments were held, processes proceeded, I started to get a swelling in my thighs, basically big soft lumps under my skin, that would come and go. I'd had these last year, and since the timing ALWAYS went with when I'd gotten mosquito bites, I assume some weird allergy/cancer/treatment reaction. FINALLY got an answer this year. Lymphodema, which means, in highly scientific jargon, "lymph nodes clogged up."

As the cancer grows, the passages in the nodes restrict, the fluid backs up, and leaks out just like that A/C drain that flooded our garage on July 4th at 11pm! So Good Doc Levine gave me, oh joy, more steriods to take. These open things up, and also are somewhat specific to lymphoma (The "P" in "CHOP-R".)  So swelling is down, moods are iffy, and sleep is stressful.

And I'm alive, working hard, doing things with the family, writing articles, blogs, going to Orlando City Lions pro soccer games, and being as normal as I ever have. Can't argue that.

Back in 2005/6; I took a large dose daily for 5 days. My family used to cheer when Pill Five went in each three weeks, "because now Daddy can come back." Rugged on your psyche, moods, sleep, and eating.  This time, its only 40% of the dose but still a bit destabilizing. I'm doing well, mostly, but am balancing steroid buzz with sleeping pills to get about 5 broken hours sleep a night. Will need this until radiation kicks in, hopefully in a week or so, then can gradually back off the Performance Dehancing Drugs.

Next post will be a draft article I'm working on to kind of sum up What I've Learned From All This.

Love to God, my family, friends, and interested Readers

Kevin

Interregnum - Watchful Waiting

 

“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

Kevin's Update

Sorry for the long gap in posting. Many reasons, which actually have a lot to do with the current state of our health care system, and (despite my VERY open public posture on my disease) a lingering concern about discrimination against cancer victims.

First, the medical summary. I finished Cycle 6 December 26-28th. Another normal, regular treatment, nothing special. Was truly glad to have it behind me. I was a bit concernecd about the size of the nodes in my groin, still bigger than they used to be before this flareup. Doc thought they might just be scar tissue, since that's where things presented this go round. Had a CT scan in January, the results concerned the radiologist. Turns out they have an index for the size/reduction after chemo, and several of mine fell above that. Had a PET scan next. PET shows metabolic activity, and since cancer is very high in this, active cancer shows up as a "hot spot" on a scan. Well, a couple of my nodes still had some activity. This was not a great day for me, it must be said.

Thanks to Dr. Levine, who is amazing at discussing this type of thing with me, he understands my preference for direct, medical discussions while being obviously concerned and even upset by the news. Dr. Shah over at Moffitt was on it, responding to my emails, late at night, within the hour. He wasn't nearly as concerned as I was.

Why? Well, he has LOTS of ongoing, very positive treatment options. He considered my current state controlled enough to press on with Plan A, Rituxan maintenance even though I'm not completely in remission. He wants to wait on the more aggressive, progressive things until my disease is "bulky" again, if ever.

He worked with his nurse to get me an early appointment over at Moffitt. His meeting with me and Sandy was very positive. (Right out of the chute, when he walked into the room, he apologized because he realized he'd left an email unanswered, a few weeks before. Got to love this guy.) Just since we'd chatted by email a couple of weeks before, he's had such great response from a new, cutting edge Phase 1 trial, he's stopped any other treatment for all his current patients and moved folks onto that one! 

WARNING: MEDICAL TECHNICAL INFORMATION FOLLOWS!!!!

The latest wonder artificial monoclonal antibody, Brentuximab, or SGN19A, is similar to Rituxan, but instead of targeting the CD20 genetic marker, it goes for CD19. Combined with Velcade, a chemo drug, it's being moved rapidly along in the normally conservative Phase 1 clinical trial process. This isn't the same trial Dr. Shah is doing, but similar, with a lot of links at the bottom:

 

http://inclinicaltrials.com/burkitt-lymphoma/01786135.aspx

 

I've had one of the 60 day cycles of Rituxan, on February 28.  The plan is to do two more, in April and June, then have more scans. At that point, there are two branches in the decision tree. One, there is less activity, or none at all. In that case, continue maintenance Rituxan for as long as it helps. Two, things are worse not better. In that case, we move to something like the trial above.

 

Now, the emotional side of things. I was not happy, to put it mildly, to still have active cancer. The normal grieving cycle happened, and I had the usual lots of support from my family, friends, and co-workers. Sad to say, I'm getting used to this. After about a month, I did have a minor epiphany.  (Epiphan-ette? Epipha-lite?) I have officially moved from ever being cured, to being in a chronic condition. Once I approach it from that perspective, it's really no different from having diabetes, or many of the cancers my friends are living with. I've been doing this for 7 and a half years now, so going for another 7 and a half, or 15, or 30, is just something to do. Science is moving very fast, thanks to huge learnings from the Human Genome Project, which I've always said will prove to be as big a revolution as the Wright Brothers, television, or the internet.

What made things to difficult to handle was my job situation. As I came out of my treatment cycle, I knew our contract would end in March, or maybe as late as June. I'd figured on being "done" with cancer, and could focus on helping my team find jobs, extend things as long as possible, and find something for myself as well without being in treatment.

Instead, I still had the damned thing. On the advice of my family, and several good friends, I decided to suspend posting on this blog, not mentioning the whole "not in remission" thing. I didn't feel good about it, and truly if I was a single man, I'd have been loud and proud about it. But, having a family who needs my income, and more especially, the benefits, I suppressed my normal public profile and ran under the radar for a while.

 

I was truly and wonderfully blessed in February to be interviewed for one of the few jobs in the post-United Space Alliance contract that Jacobs won. (500 jobs, 7,000 people applied, 21,000 total applications!)  I was OK with interviewing with cancer because the men who were considering me are both close friends, and knew about all this. However, it worked out that I interviewed for a different job, with someone who had no idea. I struggled with what to say, went through the interviews, and waited for a long long week, not knowing what I would do if I got an offer. If their benefits would not accept pre-existing conditions, I had no idea what to do. I was in active treatment. Medical benefits are in the purgatory of full implementation of the Affordable Care Act. Most major insurance companies are in voluntary compliance, but not required to be. Worse, Life Insurance, Short and Long Term Disability, and other benefits are NOT covered by the ACA.

I got the job. Which was a huge relief. Before accepting, on a Saturday, I called their HR rep and discussed the issue in a generic fashion. "I have a family member with a chronic, expensive, medical condition." She assured me this was no problem. On Monday am, when I signed the offer, I asked again. No problem. That evening, I started my new job, for free, while doing my old job during the days. We had about 3 weeks before contract start, and all of us in management worked nights and weekends to get things set up. Somewhere in there, I had a chat with my deputy director, a local man who knew me casually. He remembered my award back in 2006 for coaching an OM team while in treatment, and thought the whole thing was none of anyone's business except mine. What a relief!

Still, until I signed the benefits packages, and worked very openly with the new HR reps, I was under considerable stress. Not to mention working 80 hours a week, just off treatments, while worrying about active scans and treatment paths and visits to Moffitt. And trying to hire as many of my current team as possible, while watching the USA contract unwind. Came March 1st, I was quite relieved to go to my new job, with benefits, with 5-10 years job security.

Last week, I went in to the cancer center for a port flush. I handed them my new insurance card, waited, and got a call from their insurance rep. My insurance has a pre-existing condition clause, I'm told.

Thud.

I was so upset I just walked out and sat in my car. Luckily, I had my benefits info in my briefcase, so I called up to Huntsville and talked to the benefits rep. He was livid. He actually cursed. I have, he said, a policy with full coverage and no pre-existing condition clause. Don't worry, he will take care of it. Damn the insurance company anyway, he said.

So now we wait for things to settle out. Hoping it comes out all right. Hey, stressful living is what I do!

In the meantime I enjoy my new job, my family, my friends, and we're even catching up on things around the house.

Happy Easter to my Christian friends. And Happy Easter to my non-Christian ones, too!

KB