It Ain't Over 'Til It's Over

It Ain’t Over ‘Til it’s Over

This problem is 50% physical and 90% mental (I wish those were the real numbers).  I could do Yogi-isms all day.  Okay, so Thursday of last week Nita and I drove to Houston to visit my oncology team at MD Anderson. Don’t hate my doctor for the same reasons I love him.  He is dry, pragmatic, and a researcher.  He pulls no punches.  We went to MDA to get tested and to go over clinical trial options.

There is some good news, some bad news, and some news.  Just remember, there is a process and we are currently in the middle of a which way book.  Do you remember those books as a kid?  You would read a couple of chapters and then choose what the characters would do or where they would go and you’d skip to another page.  Then after a few pages, do it again.  It’s kind of like that.  We have certain gates to cross through in order to qualify for other things, or we can choose not to do things and there are consequences.

We met with Dr. Kee and first the good news.  The CEA is exactly 10.0, that is awesome.  Last time we stopped chemo and only did a maintenance regimen for five weeks, it shot up to 40.  I wonder if some of those homeopathic remedies are helping? As far as options, Dr. Kee said we could still try the Oxaliplatin again if we HAD to, there is a dilution process that takes 7 hours to administer, but he saw that it did have some efficacy against the tumors.  So he doesn’t want to completely rule it out in case there are no trials or we choose other options.

Getting ready for my contrast CT scan

The tumors have grown, but just barely/marginally.  Many have no change.  There are two new but very small clusters in one of my lungs and paratracheal lymph nodes.  My spleen is large and gall bladder is distended.  Just news.  It causes some stomach/thorax pain, but nothing is spiraling out of control.  The hands and feet numbness and tingling indicate somewhat permanent nerve damage.  Nice to have, not a need to have – we can live with this discomfort.  During one of my trial interviews the Physicians Assistant said there are some neuropathy drugs they can give me if I get in a trial.

Platelets.  Mine are low.  Too low.  Apparently, I have an enlarged spleen due to the chemo and it is cannibalizing my platelets.  There is a surgical procedure called a splenic embolism where they go in through the groin and up to the spleen and cut off sections of blood flow, effectively killing 50 or so percent of your spleen. It is supposed to be extremely painful.  Plus, the spleen is a big part of your immune system.  So, after the surgery I could potentially be healthy enough to poison, and my body could recover, but the flu could put me in the ICU.

Drinking my barium cocktail in the comfy seats of MDA Mays clinic

But really, I have come too far to let a little pain make me turn back don’t you think?  So, if we can get it, we’ll push on.  Dr. Kee believes that it should only be performed at MDA.  When I spoke to Netaji he asked me to call Dr. Kee and schedule it for next week.  Talk about moving fast, we’ll see if they can do it or not.  Now I’ll be in one place for all those Houston Aggies, friends, and family to come visit me in the hospital.  I’ll keep you informed.

Thursday night after my testing we went to see Uncle Sammy and the cousins at the restaurant.  We were joined by an old college friend and the moderator of our recruiting board.  The food was great and the company was awesome.  Great seeing y'all!

Friday after we drove home from Houston, we took the kids to a hockey game.  Austin has the AAA farm team for the Dallas Stars and it was great.  Oh, the team got slaughtered, but Connor and Josephine danced and laughed and had a great time.  Connor’s streak of being the luckiest fan ever continued as he left the building with a tee-shirt that was thrown into the crowd.  We got them all sugared up and then we all slept late on Saturday.  That morning Connor had a basketball game and that was great fun.  The kids are really improving and it is awesome to see.  We went to a party later Saturday night and enjoyed our community friends and celebrated a couple of birthdays.

We went back on February 1 for interviews and more blood testing at the trial center.  Here too there is good news, news, and bad news. This is going to be clinical trial 101 so here goes.  Phase 3 trials are the most promising, have the most participants, and are just around the corner from FDA approval.  Phase 2 trials are promising, they’ve figured out the dosing, and are now comparing the results to other gold standard chemo or gene therapies. Immunotherapy is awesome…but only if you have the exact match in genetic makeup, type of tumor, type of cancer, type of mets (growth in other organs), and probably blood type.  It will work, but only on a VERY small percentage of the population. 

Phase 1 trials use small user groups, do not necessarily target any specific cancer type (although they can and sometimes try to), they have shown to be effective in animals, and in many cases, are being performed on humans for the first time.  Luckily, I’m a human so I qualify.  In truth, they are just trying to figure out the effect it has on humans and what the maximum dosages are.  Efficacy against the cancer is purely secondary.  They have a reasonable expectation that it will help (it’s hard to get grant money if you keep killing all your patients), but that isn’t the goal of the trial.  So in order to get into a phase 1 trial you have to be in that small intersection of data sets that represent people who are still healthy enough for the trial and yet have nothing left to lose (so to speak). 

For an analogy, remember the scene in Princess Bride when Wesley is being tortured by the aging machine?  The sheriff asks him to tell him exactly how it feels, “it is for posterity after all, so do be honest.”  It’s kind of like that.  The phase 1 scientists want to know exactly what side effects these drugs have in humans.  Apparently, mice, dogs, and monkeys aren’t very good communicators.  I’ll try to be smarter than a monkey when giving my feedback if I ever get a trial.

Even drugs that have passed muster and are shown to be effective are still mostly temporary time buyers.  Pay attention the next time you see those commercials come up for liver cancer, lung cancer etc.  The fine print will say something like, “This drug has shown to give the patient up to four more months of life than other drugs in this category” or something like that. So we’re purchasing months not years.  BARRING a miracle, which I know many of you are still counting on, this will be similar.  Don’t give up, and I won’t either.

My options and recommendations are as follows.  Change drug protocol to Stivarga, but lower dose so it doesn’t continue to kill off platelets (chemo kills them too – ironically). This is a containment strategy as we all knew, and Dr. Netaji isn’t a big fan because he hasn’t seen it be very effective.  But it might only need to buy us time until step two…get the spleenic embolism.  Dr. Netaji or Kee will have to order this procedure and it’s done through interventional radiology.  Two or three days in the hospital is the standard.

But if we take this step AND my platelets come back up, AND I still look like I’m ready for a wrestling tournament there are hundreds of trials available and Dr. Pant (trials intake doctor) said he’d get me in one immediately.  He liked my attitude, sense of humor, and said “I looked great.”  Looking around MDA this last time, I kind of did.  I don’t mean that in a cruel way, but cancer beats the shit out of you.  Anyway, he said to come back to him with platelets over 100K and not looking like my organs are shutting down and he’d find the best possible match trial for me almost immediately.  So that is good news and things will move fast if we get in. Dr. Kee’s area is also having a trial specific to colorectal, so that too is an option…after my platelets hit 100.

The downside, of course, is what happens if they don’t come up?  At that point I’d be out of viable options, have a weakened immune system, and won’t qualify for trials.  This is when you go in the goal line defense and hope you have all your timeouts left. No risk no reward, right? 

Wednesday we drove to Houston, there must be some strong allergen in the air because it is driving me nuts. Probably the most annoying yet least consequential part of my problem list.  But it is worth noting that I have some chest congestion and a stuffy sinus cavity.  I have a meeting with Netaji to talk about the new temporary chemo drug (Stivarga) on Monday, but if I spike a fever or have too much chest congestion, I’m sure they’ll reschedule the surgery…I think.  Speaking of lists, I am going to create a series of top ten lists.  So maybe someday the kids can look through a little book and know my favorite songs, movies, books, sports moments, etc.  Instead of Nita or my friends having to remember the lists, they can just tell the stories they like the best.  Although there are a few stories that will probably never be told (You know who you are). Hey man, I never said I was giving up all the details.

Blue Steel - the world isn't ready for Magnum

By mid-Thursday, MDA had already called with my surgery screening questions and will call back shortly with times and dates.  Wowsers, this is moving fast.  An hour later three appointments popped up on my email.  The surgery will be on February 14, Valentine’s Day.  Nita and I did not have reservations anywhere yet, so that was okay.  Second was the anesthesia prescreen was set for…gulp today!  February 3, at 10:30.  Now I’ve already driven back and forth to Houston on Super Bowl week twice in a week.  I called them and thankfully it was a fat-finger error and they corrected the date to the 13^th.

So this is where some of you may come in.  I won’t have a hospital room on Feb 13, but I think I will on 14th and 15th.  I don’t know if they’ll discharge me exactly on the 15^th or 16^th, maybe even the 17^th.  But I’ll need a ride home for sure.  Nita needs to be with the kids and keep their routine as normal as possible. I also can’t be released solo, or to a cab.  I’m sure with all the family and friends, it’ll work out. 

Another funny thing, my being out of standard care options has a lot of medical professionals giving me “the look.”  I suppose the math is pretty serious because the intake nurse was asking me if I had any feelings of depression or suicide.  You have to have a REALLY good relationship (or establish one quickly) in order to say, “I do kind of feel like hurting myself, but I also feel like taking someone with me.”  Nita was with me, ask her…of course I said that. ;)  We also later found out that MDA has a “dudes in white coats” button in case I was serious. Note to self.

Okay, so this is where I ask you not to hate the guy for the reason I love him.  When asked the question directly Dr. Kee confirmed that he wouldn’t bet that I would be around next year at this time, but one never knows.  I appreciate that candor.  I’m not the woe is me type and I’m not about to give up, so I just want to know what I’m up against.  I’m still making end of school year plans and some early summer plans, so I’m not thinking that this thing will take off on us…but it could.

Baseball season is coming up and tryouts are just two weeks away.  This Saturday is the daddy daughter dance and even though it will be only our second one, Josie has exclaimed that it is just something that we do!  And she is so excited about it, frankly so am I.  It looks like we’ll practice some baseball, watch one last football game this season, and enjoy the weekend.  Who knows what next week will bring, things are moving pretty quickly. 

So thanks for the Hawaii trip and everything else along the way.  You are the best.  Oh, and we got our Maui photoshoot pictures back.  Thank so much to Without Regrets!  If you find yourself on the island and want a great photoshoot, please look up Mariah Milan.  She had us do some goofy stuff, but the results were fantastic and created some very touching moments. 



Whatever else may come, we'll always have Maui

So where are we now?  Well, I have made peace with everything and hopefully everyone this last year and a half, and I feel pretty good about things. I’ve had a blessed and charmed life and most of you who have known me for the long haul can attest to that.  I have the most amazing friends and support group and my family is tops. I’m going to start on those letters to the kids next week so they’ll have letters from me every year on their birthday.  I’ve got to finish my last set of edits on the book (thanks Mrs. Dew) and get that rolling.  Finally, thanks for tagging along and following my journey.  I hope we can keep this going a while longer, but just in case…I love you and God bless you.  Team Marco.