Memorial Day

I've been home two days and sharing a day of remembrance with the country.  Today I'm remembering all the great folks joining my fight against cancer.  And you all are joining a fight, don't kid yourselves that you are only lending support, just sending positive energy or reading a blog.  By caring you've decided that my cause, and the fight against cancer cause, matters to you and can have consequences to you when things do not go right and losses are taken.  You've each put a little bit of yourselves on the line by reaching out to me, coming to me here or meeting me somewhere where I needed you.  I'll honor that commitment and fight for you, my allies.  My family has been great, friends and acquaintances from work and personal life continuously surprise me (and top up the old hope reservoir).   Sometimes big things, sometimes things that may seem small can mean so much each and every day.  Today some neighbors wheeled a Lazy Boy recliner down the street to my house because they heard I was going to try to go out to shop for one (I'm spending so much time in bed).  They left their barbecue and pushed the damn thing all the way down Marigot Drive and into my living room.  I bet cancer does not have a Lazy Boy, or such friends as these.

Concessions

I checked out of the hospital yesterday, and Ann and I are spending a couple of days in a local hotel in Houston as my body resets and hopefully gets ready for the flight home - especially my liver as my blood counts remain dangerously low.  I am so happy to be out of that hospital room and the IV machine, but am a bit worse for wear.  My skin is shot with chemo burns and various splotches and irritations and I still cannot stand any kind of food.  I still have my PICC line with two valves coming out of my arm, cyborg style.  Ann took a class on how to change the dressing on it and keep the lines clear and passed a test in front of a RN yesterday, I'm very proud of her.  Plus, I'm really weak - and it kills me to admit it.  Ann and I walked across the hospital to the pharmacy yesterday and it wiped me out most of the day and I had to lay in bed for the duration.  On the other hand, it was the first time I received a shopping bag full of meds and a whole other shopping bag full of medical supplies.  They are sending me home with 10 prescription drugs and other creams, lotions, salves, etc.  I guess the two weeks at home will not be a return to normal.  That whole reality, that "normal" is something we left behind last week before I got admitted and not something we'll see again until I finally kick this cancer, really did hit me hard.  I've already given up my career, my beloved bike. Now no more playing with the kids in  the pool, chasing the dogs around the house, having a beer at the end of the day with the wife.  OK, cancer got one up on me on this front but I'm not conceding easily because this is temporary.  When I get that lifestyle back I'll relish it, and worship each energyful moment I've been able to snatch back from the disease.  All future non-sick moments will be a small dance on cancer's grave and I'll savior each and every one

Round One - To the Fighter in the Pajamas

It's 4:20am and they ended the IL2 at midnight so I'm starting to feel sort of human again. My blood platelette count took a dive so they cancelled the last Interferon shot, meaning that round one is over and I'm still standing. The chemo effects will continues to work on the cancer for another week, and on me as well, but we know who'll get the worst end of that. The past five days have been amongst the hardest challenges of my life, I cannot believe this is standard treatment for cancer patients. The thought of thousands and thousands of other parents, or children, out there going through the same thing I just did fills me with a great deal of sadness but also more determination to do something about it when I kick this. Pat, the leader of zMotion, told me about a new event with Livestrong in October and I've circled that date on every calendar I have as my target return back to a normal life and taking the battle to melanoma. I'm just starting to catch up on all the e-mails of support - they mean the world to me. Sorry to be so scattered, just wanted to let you all know as soon as I could that the bell has rung on round one.

Slugging it Out

Well, Day 3 of biochemo and I'm still kicking. More like I am hangin on - this stuff really, really sucks. Each of the five anti-cancer drugs have their own side effects, so combining them creates Dantes cocktail. For me its mostly bone rattling chills and nausea. I have nine blankets on me right now. The staff here is amazing, and they have an enourmous arsenal of drugs to counter, or minimize, the side effects. I have two days left of vinblastine and cisplatin - both chemo - and also two days of IL2 - the primary biologics. The biologics make you feel like you have the mother of all flues. And three days left of the biologic Interferon. I can suffer through anything for three days more, especially when I imagine the toll its taking on cancer. For every effect it has on me it has a more pronounced affect on the disease. I feel like we are some Rocky movie slugging it out in the corner, trading blows one after another. The will to win, to overcome, to vanquish the foe combined with a deep seated belief in your own strength keeps you from stepping back and throwing in the towel. That's all I can write now - thanks for all your support and supporting Ann who is standing by my side through all of this, every message is a little firework of hope in my heart.

D-day

I love the smell of dacarbazine in the morning. Actually it is 1:37am and, as far as I know, dacarbizine is odorless. But this is an epic dawn in my fight against cancer, here from my hospital bed, I feel as if we landed on enemy shores ready to do battle. Ann and I arrived in Houston on Thursday, catching a plane after Gwen's pre-school graduation (she was awesome). My Dad came with me for my surgery the first week of May, but Ann is joining me for the first round of BioChemo while her Mom and Don take care of the girls (to which we will forever be in their debt). If we think I can take it without my awesome wife/advocate/thinker-of-smart questions then we'll be looking for volunteers for the next vomit comet. Yesterday Ann and I caught up with Dr. Patel. She said things were on track for treatment and also that my harvested tumors were pouring over with active T-cells fighting the melanoma (which will hopefully grow enough to replace all my current t-cells). That is a darned good bit of news. Combine that with my eye having almost no issues after the radiation treatment at home and i'd call yesterday a birthday party in lab report. Then last night I checked in at MD Anderson, the first time I've ever checked into a hospital. But first I had to get a PICC line (peripherally inserted central catheter) that goes from my left arm to my heart intravenously. This allows me to get all the drugs without any more needles, but boy that one needle was fun. I'm actually going to keep it in while at home for two weeks because getting another would be that bad. It's the biological equivalent of plug'n'play and having it is great for the many servings of the five main drugs and the dozen or so other drugs to treat the side effects of the first five. I still get pills and shots (in my belly fat - really?) but most is plug'n'play. I am getting drugs the whole five days, 24/7, so I am married to this machine all this week non-stop. The machine doing the pumping, pictured here, is pretty amazing looking, especially in the dark. I'm calling it the CEWP, the Cancer Eradication Weapons Platform. From that platform the chemo agents go out to kill the cancer and the biologics go in to start boosting the local militias. When I turn out the lights it blinks and beeps like a command and control center, deeply involved in a dead-of-night military operation. It's going to be a long fight, but the boys are on the beach.

Pre Race

First of all - so many thanks for all the positive thoughts from all of you, it means more than you can imagine.  Well, one week of radiation down and there seems to be signs of success.  My proptosis – the bulging out of my right eye – seems to have gone down significantly and I do not feel the pressure any more.  My vision this week was changing daily because of the poking in the sphere and the bending of the optic nerve was probably changing daily with whatever reduction in the tumor.  Today, my vision in my right eye is pretty poor but hopefully it will adjust.  I have not lost my eyelashes, eyebrow or the hair at the back of my head where the radiation comes out, so that is good because I have at least one or two more days in the office.  Five more treatments to go.  The lymph mode removal surgery formed a seroma – a fluid filled sac where the node used to be – and it is annoying.  Its like having a tennis ball stuck in your armpit, not too painful but annoying.  I hope they can aspirate it on Friday before I start biochemo.  The seroma is like all my previous experiences with doctor’s estimates in that they said a small sac that will hardly be noticeable will go away by itself in short order.  In my estimation, it’s a very large protrusion under my skin that is impossible to forget that will take 1-2 months to go away.  Not that I’m bitching, just that it worries me about the biochemo I start on Friday.  Doctor’s have been at a loss for words to explain how bad that will be to go through, but it’s universally agreed that it will “kick my ass.”  So what’s it really going to be like?  I have to think about what it will do for me and not what it will do to me, and it is a long distance race.  I keep thinking back on great bike rides where I outlasted other riders, pushing myself far beyond where I even thought I could go.  One time I was with a really strong group of a handful of riders who broke off the front of a casual Saturday 65 mile ride.  We were all pushing each other faster and faster and I knew we were biting into our ability to keep the pace over the whole ride, this was a showdown until somebody broke.  I also knew I felt stronger that day then my estimate of how the others felt, I’ve ridden with them enough to read them.  I started showing signs of flagging, sticking out my tongue and wagging my head with the effort.  In the corner of my eye I could see they allowed themselves to do the same.  Then I started to sway my hips slightly, pedaling more square than circles, grabbing my water bottle a little too hastily.  They did the same.  I knew ahead in the road was a slight rise followed by a flat section then a right turn up to the beach.  If I could break away on the rise and stay away until I turned out of sight I doubted they would chase me.  Once someone is out of sight it psychologically very hard to keep up a chase.  I fast forwarded my iPod to a motivating song – “Undead” by Hollywood Undead and, at the start of the rise, stood on my pedals with every last ounce I had.  When I topped the rise I got down in my drop bars and pedaled for my life, never looking back.  When I hit the beach after the turn I was alone, and for the rest of the ride.  I think this biochemo will be the same, me versus cancer to see who will outlast each other, who will push it to crazy limits of suffering until somebody drops.  I’ve been training for this race my whole life.

Second Strike

So two tumors down (right arm lymph node and a metastasis on my left hip), and the second strike was radiation on the right orbital mass today.  At Sylvester CCC in Deerfield I'll be receiving a total of 10 low dose radiation treatments  on the orbit which will hopefully stop the growth, or even shrink, the size of the mass.  This is palliative, meaning that it does nothing against cancer overall to make me well but alleviates the symptoms and stops potential problems.  The only problem with my right eye is the mass and the sheer size of it pressing on my eyeball and eye muscles.  This has caused proptosis - a pushing out of the eye ball - as well as blurry vision from a bent optical nerve and limited upgaze because the mass is inhibiting the muscle below the eye from allowing it free movement up.  When I look up my right eye only goes so far while my left just keeps on going.  This causes double vision, most notably when watching a TV above a bar, and strange looks from observers who see this happen (it's quite odd looking).  Treatment is a direct beam of radiation - low enough intensity to spare the optical nerve (I hope) but strong enough to bake Bob (that's what we call the eye tumor).  This, of course, requires high precision alignment of the beam because we're talking millimeters of placement and angles.  To accomplish this they made a custom mask (seen here) for me that holds down my head in a vise-like grip to the table while in the machine.  It looks like a medieval torture device but it's not all that horrible.  However, I had trouble breathing with it on and after a while - they were setting up for a bit on my initial treatment - I started to panic and feel claustrophobic.  Deep breathing was out of the question as I could not draw deep breaths so I tried to focus on happy thoughts.  The main one came to fruition when the red lights started to flash and the beam was turned on.  All I could think was "burn, baby, burn."  I think we are getting cancer's attention.

Surgery and Decisions

Underwent surgery yesterday in Houston to remove a cancerous lymph node under my right arm and another cancer met (metastasis) on my left hip.  The scientist at MD Anderson will extract the t-cells that are located within these tumors that are trying to fight the cancer and see if they can grow them .  If they can - we'll know in about four weeks - then we can put them back in my body to fight the cancer.  They say the chances are about 50-60% that they will grow, and if it is successful then the TIL (tumor infiltrating lymphocytes) procedure has about a 40% response rate.  That's a 20-24% overall success rate but with some very promising long lasting results (a link to the details of this clinical trial is below).  The problem is that this is a slow, longer-term treatment that can not be started for at least six weeks.  The question now is what to do between now and then to slow down the cancer?
I have boiled down my systematic treatment options to two - biochemotherapy or high dose IL2.  The first is very aggressive and only regularly done at UCLA or MD Andserson , and is controversial.  In 2002 results for biochemo were promising, especially over the unsuccessful chemo treatments at the time.  It seemed to offer higher response rate than high dose IL2, but subsequent studies have questioned the long term higher success.  Places like MD Anderson state that their care centers are better than a typical hospital or cancer center and their patients have higher success rates because they can give higher toxicity treatments and  keep their patients healthy. They also have more treatment options overall and can guide their patients into treatment protocols best suited to their particular situation.  All this leads to them having higher response rates than other facilities with the same protocol. Other facilities disagree and claim that biochemo is higher toxicity for questionable results (at their facilities).  This is what Mount Sinai and Sylvester cancer center also said to me, and both suggested I go for traditional high dose IL2 instead.   So what to do? Less toxicity - especially no chemo element - in a local facility sure seems easier than flying to Houston.  But walking around the Texas medical center yesterday, seeing the thousands of cancer specialists in their state of the art high-rise facilities, it is hard to imagine that there is no truth in the claim of superior care and easy to suspect some ego in the claim of the smaller cancer centers.  When I'm wretching in the hospital at 3 am I'm going to want to be surrounded by the best care I can find. And I decided early on to go for the most aggressive options available to me to take advantage of my strengths, even if the more aggressive option only improves my statistical chances slightly, because I believe that faith in the process contributes to success. Myth is that when Cortes landed his invasion force from Cuba on Mexico's shores he burned his landing craft to underscore his commitment to the mission, and to motivate his men to fight only onward.  I'm ready to commit. On May 20th - my 45th birthday - we begin.

Logistics

General Barrow - USMC Commandant in the early 80's- said that "amateurs talk about tactics, but professionals study logistics." In the past couple of months I've average half a dozen doctor appointments a week while maintaining my job, my fitness and other obligations. I feel like I'm always working my calendar, coordinating between different medical facilities, doctor specialties and geographic locations. Today I got set up for radiation treatment at Sylvester CCC in Deerfield Beach, where they did a CT of my right eye orbit and made all the measurements to begin radiating the area on Monday. They made a mask of my face that will hold my head in place as they radiate the tumor in my right orbit a total of 10 times over the next two weeks. It should halt the growth of that particular tumor, maybe even shrink it and save my right eye. The eye has not bothered me much the past few months, but had reached some kind of critical mass in the past week causing pain, blurry vision and an overall nasty appearence. Then off to Miami Beach and a third opinion about cancer treatment at Mount Sinai with a popular and highly recommended oncologist (more on that later). I should wrap that up by 2:40 giving me an hour to get to the Ft. Lauderdale airport for a 4:40 flight to Houston for surgery tomorrow to remove the right axilla lymph node for potential T-cell treatment. I also managed to squeeze an opthamology appointment in the morning before surgery to check on my eye to be sure it hasn't gone too far. I might be able to squeeze something into the afternoon post-surgery, too, so more calls to make before take-off. Cancer is not organized, cancer does not have logistics. Cancer will be wondering tomorrow why Cancer Dave up in the axilla is not responding anymore. He was snatched by an oncological surgeon, and taken off to the mad scientist lab to be turned into a biological weapon against cancer. Yes, cancer, strange things are starting to happen. Start looking over your shoulder because I am coming for you.

Why I know that I am going to kick cancer's ass

Cancer has picked the wrong fight. My outward appearance of a mild mannered, middle aged financial executive belies the reality that I am an ex-Marine, endurance athlete with significant resources and mental toughness to bring to bare on this opponent. I have partnered with the best medical team in the world and have access to the latest and most lethal cancer fighting weaponry. I have met many tough challenges and know that I can overcome significant odds - I've done so my whole life. Cancer has not only threatened me, but threatened my children's future and my family. I will bring down the wrath of all I find holy on to cancer and obliterate every trace of it from my body. I will first starve it of any sustenance, then hit it with the Mother of All Cancer Treatments - biochemotherapy. The biologics of Interleukin 2 and Interferon will boost my immune system to battle the cancer trying to grow inside me. The chemo - a lethal combination of Cisplatin, Vinplatin and Dacarbazine will choke the life out of it. Cancer has no idea what is coming its way. Then, when it is on it's knees (as I will be) I'll launch the second wave - TIL or Tumor Infiltrating Lymphocytes. These will be growing in a lab for the next month, becoming super T-cells with a terminator mentality and a target on melanoma. These will be deployed in my body like the Marines at Tarawa and search out the cancer cells wherever they are hiding and dispatch them with extreme prejudice. They will find cancer's friends, family and pets and kill them all, too. They'll shit on cancer's grave and then stand sentry for the rest of my life. At the end I'll stand weakened, but unbowed, and cancer free.

Day 1?

Today is my first day fighting cancer. After a few months of confusing symptoms and testing and preliminary diagnosis, a plan is forming. Last week I went to MD Anderson in Texas where they confirmed the diagnosis and helped craft a battle plan. The diagnosis is Melanoma Stage 4-C, the worst/highest/most dangerous type of melanoma with an associated grim level of survival. Statistics would say I have 6 months on the inside, 12 on the outside - from last September. Last weekend I rode my bike 95 miles at a competitive kick-ass pace so I think the stats, as they can often be, are misleading. My usual Monday morning routine consists of a 30 mile bike ride and stretching and heading off to an exciting day of work after a couple of blissful sunny Florida weekend days. Today - my bike is on the rack indefinitely, and I'm heading to work to tell my boss that I'm going to have to claim disability and I'm planning on 12 weeks on treatment with no work. Time to clear the decks, all hands to battle stations as we confront this wicked enemy. Some coincidence perhaps that the evil Osama Bin Laden, who has hidden in caves and dark places for nearly a decade while reaching out to hurt our interests, was reported rooted out and killed today. Navy Seals, on the hunt for all this time, captured him, killed him and unceremoniously dumped his lifeless body in the sea. That is what I'm planning to do with cancer. Watch out cancer, I'm coming for you.