Does it hurt when I do this

Does it hurt when I do this?

If you are responding to any form of this question after the splenic embo (inside lingo for embolization) then the answer is a resounding yes!  A lot! It’s about an 8, where ten means I am going in to remove the rest of the spleen myself. But a few good things happened this week.

Friday, the pain made me glad that we came home Thursday and didn’t wait around. The pain was just starting to go into overdrive (still no appetite btw) but a lot of my distress was alleviated by the fact that I was just glad to be home.  The pulsating waves of dull and sharp pain were mostly manageable with the hydrocodone until I woke up Saturday.  That is when the pain really came raining down.  Two things were happening.  1. I had not had a movement since the morning of the day of the surgery. 2. Any pressure (like for example a stomach not emptying itself) at all on my spleen was causing acute stabbing like pain which radiated up to my left shoulder (yep, made me nervous too, but apparently that is normal).  I rechecked my prescription list, this time with my glasses on, and noticed there was a mild laxative that was supposed to be picked up.  What I didn’t notice before was that it was over the counter, so I could have been taking it as early as Friday.

Choosing Hydro to fight this was a very very bad decision.  As stated last week, if your doctors offer you stronger pain meds, you take them! Period.  Nita kept the kids entertained and I just stayed in the mancave and finally ate some of my mother’s caldo (chicken soup) for dinner. I had already had two doses of the laxative. Key learning point, use the right tools for the job.  Hydro was not the right tool for this job.

Sunday, mercifully I pooped.  I had been farting and moving around and even chewing gum (all the tricks of the trade), but this was perhaps the best poop I’ve had in a very long time.  The problem (not that I’m complaining) is that it definitely had the aroma of a movement that may have been lodged for six days.  Good thing blogs aren’t scratch and sniff, right?  The smell was nothing compared to the pain of the dying organ and the modicum of relief when a little less pressure was put on the spleen. 

So how would you describe the pain?  Glad you asked.   I was informed by two oncologists that people who recover from heart attacks talk about the chest pain.  That chest pain is the organ dying inside the body and the body’s attempt to absorb it and go on about its business (not really knowing that it’s pretty essential, but figuring it out along the way).   So, the spleen pain is similar in that they have just killed 60% of an organ in your body and left it there.  The body then has to absorb the dead tissue while the tissue still fights for survival for a bit.  That is the what, here is the how: It feels like you are being stabbed repeatedly in the side.  Constantly. 

Another analogy that more of you may be able to understand, especially fighters, wrestlers, and football players.  Broken ribs or pulled intercostal (between the ribs) muscles.  Remember that feeling that any expansion of your rib cage causes pain?  It’s kind of like that, but without the relief that pressure or a wrap might normally provide.  With the dying spleen, deep breaths hurt more, shallow breaths hurt too.  Pressure on it hurts a lot, laying on the other side of your body, hurts a lot.  Sitting up hurts, laying down and standing up hurt.  Is there a comfortable position?  No.  You ride it out…with the wrong drugs.

Mercifully on Monday I had an appointment at MD Anderson to go over the results and check for bleeding.  The results were fantastic.  We needed 100K platelets and we recorded 176K! That was fantastic.  I told my doctor about my medication flaw and he rectified it on the spot.  He wrote me a script and the lovely and talented Karen Sonleitner who is a rabid longhorn fan but was also a Travis County Commissioner took it up to the pharmacy for me. Yes, Karen was my celebrity driver on Monday and thanks to her we had a very easy drive up and back on Monday.  Oh, and my CEA score came back at a solid 14.0.  That is unbelievable considering I’ve not had any form of chemotherapy since January 3^rd.  That is not a huge jump, so we’re not seeing a really aggressive takeover of my organs while waiting for trials.  This is actually great news.  I wonder how much of this is due to the holistic approaches? 

In addition to prescribing the correct medication, Dr. Kee sent in a trial intake coordinator to speak with me.  She said that my original tumor tissue needed to be biopsied to ensure it had the proper markers.  Those will be fine since this is actually a trial specifically for colorectal patients.   That is the most exciting part.  I will not just be some dosage lab rat for a generic cancer drug.  These may or may not work on me, but at least they were designed for colon cancer folks and that is me. I’ll be among the first humans to ever try this…but remember somebody, somewhere ate the first egg.  That had to be a risk, right?  “Okay, Gruuudt, whatever comes out of that chicken’s butt…I’m going to eat it.  Deal?”

Saying our prayers for repentance to absolve sins

In all this excitement and pain management and poop anticipation we almost forgot about Connor’s big day.  Connor received his first reconciliation on Thursday night.  We were so proud and very excited and even practiced a few confessions Wednesday night (with made up sins).  But it is important conceptually when you think about it.  Being able to recognize when you have done something wrong and sincerely apologize for it is a big part of a healthy relationship.  Whether that relationship is with your sibling, parents, spouse, friends, or God.  Even your children, it is important to apologize to them when you make mistakes, remember that you are training them to be an adult with every word and action you choose.  This will be good practice for him recognizing that you don’t have to be perfect and there is a vehicle to absolve your sins if you will just sincerely apologize for them.  Yep, it kind of is that simple.

Taking it one step further, a large part of my journey has been not only sharing my story and trying help folks along the way, but also finding those whom I have wronged and asking their forgiveness.  Then in turn allowing them to either forgive you and absolve you of your sins or not (it is still their choice).  But learning this skill as a child is extremely valuable in becoming the type of person you want to be around.  Sure you can have fun and do stupid things, but if you wrong someone, you stand up, man up, and apologize.  No excuses as to why it may have been someone elses’ fault.  It’s the very first step toward accepting responsibility for your actions.  So off my soapbox, but I think it’s a big deal.  Too few people tell each other they are sorry especially when there is an out, we have somehow demonized taking responsibility for our own actions over the last few decades and that is sad. 

Side effects:  Since the chemo has been off for a while only a few things are happening.  Nausea.  At least once a day I go on a dry heave run which makes Nita nervous, but usually passes in 15 minutes or so, 30 minutes tops.  BTW, the heaves are even less fun with the stabbing spleen situation, just saying.  My fingertips and soles of my feet still have numbness and tingling.  I had no problem throwing a baseball on Tuesday though, so it could be worse.  I can drink cold drinks again.  Halleluiah! The appetite is on fumes.  I don’t know the calorie count, but it isn’t very much.  But I’m eating enough that there are no headaches or stomach growls going on.  And finally, the splenic stabbing sensation is down to about 50% intensity since Thursday.  I was actually able to hug a couple of people at Connor’s reconciliation.

Connor had a baseball practice on Tuesday.  I took him and had no intention of participating, I just wanted to meet our team that I’d be helping coach.  I can hear some of you laughing now.  So I ended up running the rundown (pickle) drill and did a lot of coaching without the ball, but I had fun and Connor had an absolute blast.  His team is pretty salty and this should be a fun year.  And…dah dah dah…Connor will be wearing number 25 this year.  Pretty sweet.

Thursday morning I went to go see a movie with Omar.  It was nice to get out of the house and I’m wondering if my appetite is going to come back or stay in this limbo.  I can’t blame the chemo anymore because I haven’t had any in six weeks.   It must be the cancer or the surgery at this point.  Frankly, my appetite wasn’t that great before the surgery, but I’ve got some weight to lose, so no panic button there, but we’re down 10 pounds since the surgery.  Clothes fit better though.

Josephine has been going on and on about her Halloween costume for next year.  Yes, she likes her some Halloween, but I found out the real reason.  She’s THAT competitive.  Connor won the BCC costume contest two years in a row and sister is just not going to have that again.  So this year, she plans to unseat him from this throne and win the basket of candy!  There can be only one!  Love my little girl, she is a determined soul and will not be stopped.  I am confident that she will make it in life and do well.

So look at the whirlwind roller coaster we’re on.  It’s been absolutely crazy all that has transpired in the last couple of months.  From the tournament and event, Christmas, Maui, the splenic embo, and now starting new trials in a few weeks.   I am so blessed and surrounded by many amazing people. It is hard to fathom sometimes.  I mentioned that I’m going to get a trial in Houston and offers for drivers and housing started popping up in my feed.  There are angels all around us, I’ve written before, and it is worth saying again.  Thanks again to all of you, I don’t think I would have gone this far without all your love and support.   So after I post this, I’ll pop down the stairs to the rhythmic stabbing of my spleen and figure out another way to be thankful for today and love on my friends and family. 

Last thing, the title of the blog was almost, "Forgiveness.  It's more than saying sorry."  But I thought it was too obscure a movie line (Just Friends) to use for this.  But if you get it, enjoy. TeamMarco

So how was your Valentine's Day?

So how was your Valentine’s day?

 

Saturday Connor had his last basketball game and thank goodness. We ran into a Buzzsaw team that annihilated us. Our best point guard was out and it made a huge difference.  I’m not going to get all Van Gundy, but the ref really didn’t enforce some of the no steal and cover your own color (arm band) rules we’ve had all season.  But Connor had fun and it was a successful season.  I say that because Connor was itching to keep playing.  We then had a team party afterwards and then later that afternoon we were off to baseball tryouts.  Connor did okay and we ended up on the Rangers which makes me so very happy.  Now I get to gear up all the kids and wife in Rangers stuff. Josie was drafted on to a tee-ball team with two of her favorite friends.  That should also be a great season. On Sunday, we had a cub scout meeting where he learned how to keep his campsite clean, present the colors, fold a flag, and tie knots.

Monday, February 13, I headed off to Houston to check in with the anesthesia group, get some blood work and an electrocardiogram. Tuesday would be my surgery date, but not until 2pm.  A torrential storm hit Houston and effectively crippled downtown for a few minutes, but luckily, I was safely tucked away and fasting at Lance’s house in Santa Fe (just outside of Houston/Galveston).  My appointment was moved a couple of hours but when we finally drove in, it was clear as bell and traffic was light.

While most were out on dates or getting chocolates and flowers I thought it would be more productive to have my spleen embolized, effectively killing 60 percent of it.  What they do is run a tube up your femoral artery right about at your underwear line (I suppose depending on where you wear yours), and over to your spleen.  Then they inject gelatin sponges to damn up a couple of arteries in your spleen to actually stop the blood flow.  The tissue then “dies.”  Also, since they went through the femoral artery, they have a little dissolvable cap on the artery so you don’t “accidentally bleed out.”  I’m thinking since it’s right on the underwear line, I’m probably going commando for a day or two.  No peeking…you know who you are!

Pre-op

I was told throughout the lead up and just before the procedure that it was very painful.  Well let me tell you it wasn’t that bad…so I though.  In the recovery room, no problems.  They gave me my little pain button with a loaded bag of dilaudid; and it was available every 15 minutes.  So I stayed in front of the pain.  But that also meant a long and sleepless night.  I thought I’d been in bed for 8 hours and looked up and it was only 2AM.  But if you remember surgeries, there is a constant barrage of bloodwork and vitals to be taken throughout the night.

Post Op valentine I sent to Nita

The second day, still no pain, and I walked around the halls a few times to get my system back on track.  I still had no appetite but tried to choke down a few things.  The other problem was I was drinking so much water and eating ice chips because the surgery and dilaudid made my mouth so dry I couldn’t swallow.  So I would try to hydrate to at least regain the ability to do that.

At meal times, I was so waterlogged and had such a low appetite I basically picked at the food and took a few bites, there was no concern at the nurse’s station as this was a semi-common response even though this is a rare surgery.  So rare, in fact, that the Physician’s Assistant thought that I might have to stay another day when my numbers fell.  Right after surgery my Platelets score (the score we’re all watching fervently) shot up to 103K.  I posted on FB, sent some texts messages and even started a string on my Aggie Yell board.  The next blood test on the morning of the 16^th had my platelets at around 73K.  Uh Boy.  You can imagine the thoughts going through my head: Oh well, we gave it our best shot, and I hope I can make it long enough for Nita to qualify for spousal death benefits at work, etc.

Then the Doctors both came in, the attending physician and good ole Dr. Kee my MDA oncologist (the king of no bullshit).  Both said that the numbers would fluctuate while the spleen fought for survival.  Essentially the spleen is one big lymph node in the immunity system and might have been chewing up platelets to save itself…temporarily.  Kee even said that the real numbers may not be apparent until Monday or even the following week or two.  Here comes the great part.  He even said that there is a trial that he wants me to get into; and as soon as I show 100K, he’ll get me in it.  We are meeting on Monday to do bloodwork and get it checked out.  I have a hunch that he’s been saving a spot on his colorectal trial for me.  Two weeks ago, and there are only 20 spots, he’d already had 12 interviews, I’m not questioning a blessing, but thanks to either God or Dr. Kee for holding the spot for me.

The reason a trial in colorectal is important is because it is specifically targeting colon cancer and associated metastasized organs.  The other trial intake was for any and every cancer.  You might get in a liver trial or a pancreas trial or a throat cancer trial…and they are simply trying to figure out dosages and side effects with the efficacy of the drugs being secondary or perhaps tertiary.  In this one, it is specifically looking how colon cancer patients react to these drugs which (in my opinion) gives a higher possibility of success.

Back to the dilaudid.  So as I was pushing my button and getting the bolus (bolus is a fancy word for a measured shot administered over a specific amount of time – usually between 30 seconds and 3 minutes) occasionally from the nurse, I was getting terrible headaches.  The nurses said that when an organ is dying you’ll get headaches but it might also be the narcotic, but they couldn’t give me Tylenol for the headache.  I also wasn’t drinking coffee like normal.  Anyway, I made a game time decision while the doctor was writing my take home prescription and I asked for Vicodin 10 because it had Tylenol in it and I know it doesn’t react unfavorably with my body. 

Our friend Ann Marie took Nita and the kids to top golf for Valentine's

The organ pain started on the drive home on the 16^th.  I figured it was the jostling from the car ride.  I’m afraid it might have just been the onset of the actual organ pain (the spleen’s final fight to the death) or the wearing off of the dilaudid.  I got home and took my Hydrocodone (same as Vicodin) and it somewhat went away.  As I tried to sleep, I realized a valuable lesson.  If a doctor offers you a higher-grade narcotic for your pain, you take it!  Don’t try to out doctor your doctor.  So I have been taking my Hydro’s on schedule, but holy shit does my spleen hurt.  To the point where Nita asked me if I wanted to take the kids to school and I was on the fence, thinking maybe I shouldn’t drive at all for a day or so.  I explained to Nita the situation and she said, “Wait, the doctor offered you stronger meds and you said, ‘no?’ You are an idiot.”  She’s right.  The worst part is there is no comfortable position: sitting, standing, sleeping, pressure, no pressure…it all sucks.  I hope this goes by in a couple of days.  Phew, I thought I was tougher than this.

Connor didn't believe the security guard had hand cuffs

My appetite came back a little and I was able to eat my mother’s caldo soup last night.  It has always made me feel better and yesterday was certainly no exception.  It’s a long story, but I am determined to find an Arby’s today and pound down a roast beef sandwich.  Right Lance?  By the way.  Special shout out to Lance Gibbs for taking four days to shuttle me to Houston, take me for my appointments, put me up in his house Monday night, visit me every day, and then bring me home without ever making me feel like it was a burden or he could have been doing something else.  Also on the Aggie Yell side, JPhillips sent some Tiffs Treat cookies and brownies. Although I was unable to eat them hot, they were just as tasty on Thursday afternoon with my wife and kids.  Also, Big Bobby B brought Papa’s BBQ.  I also couldn’t eat it, but it will make for fantastic leftovers.

A couple of other housekeeping notes.  I showed up with all my medicines neatly separated into the nice days of the week container Nita gave me a few years back.  Well, the nurses and pharmacists wouldn’t let me take them.  “THEY” had drugs they could dispense…except for the bystolic.  Bystolic is a blood pressure med and it actually costs me $50/month to take. But since I didn’t bring it in the original bottle, they couldn’t “verify” that it was an undoctored pill. So about six times they had to retake my BP and ask me stupid questions about anxiety, or chest pain.  I kept begging them, ”Look, just bring my little pill box, leave the room for 1 minute, come back and take my BP and no one will be worried again.”  No dice.  Oh, and as many of you know, cancer and surgery sometimes make you nauseous.  At home, I had a nice little bottle of Ondanzatron (Zofran) that I keep by the bathroom sink.  It is a dissolvable pill that works lightning fast.  The nurses would file for the Zofran, the pharmacy would fill and send it up, within two hours.  So how frustrating is that? Fighting heaves for two hours for something that is in your bag on the nurse’s station just 15 steps away.

But I got home safely and was so happy to see the family.  The kids were excited to see me and we joked through dinner.  It made my heart full and reminded me why I do all the things I do anymore.  I am thankful for my blessings and that I’m able to laugh at my trials and tribulations.  If you can’t keep a sense of humor about this stuff, I think it’ll kill you faster.  I have no empirical evidence, but it’s my theory. The appetite is slowly returning, I’m having a cup of coffee and a yogurt as I write this.  All in all, I feel positive about the week.  I certainly hope that next week brings good news and that trial can do some good.  If I remember the details correctly it is one or two days at MDA, then two weeks at home.  I can CERTAINLY live with that. 

One other funny thing.  Since we were spending valentine’s day together, I gave all the nurses, doctors, and attendants who came into my room children’s valentine’s cards.  They were a huge hit on the floor.  One nurse took it to another level claiming that she alone was my valentine.  And when I did my laps around the nurse’s station she’d yell out, “Heeeeyyy, how’s my valentine today?”  She was adorable. Oh and a priest came by the room and gave me communion and performed the anointing of the sick again (yes you can do it more than once).  I’m not saying I’ve racked up a bunch of sins since Dec 22, but it’s nice to know the slate is clean again.

So the volume of texts, posts, likes, comments, and calls certainly made me feel like I wasn’t alone on valentine’s day. Thank you from the bottom of my heart.  I don’t think this path would be as easy to travel without all of you lining the virtual sides cheering me on to keep moving and keep going.  Suffice to say, I have no intention of letting you down.  God bless and I love you!  Plus as a friend said, “God’s not done with you yet.”  So, I guess we’ve got more work to do.  TeamMarco.

If you fail to plan, plan to fail

If you fail to plan, plan to fail

My dad and probably most of the great coaches you ever had have uttered those exact eight words.  They are simple, obvious, and so underutilized. How many folks do you know that just go through life simply hoping for the best?  How many kids when you were young dialed it in and figured they’d “do okay” on the test? Preparation is the key to almost everything.  Clearly you can’t prepare for any and every possibility, but you can, in fact, get the big rock stuff (rocks in a jar) more or less squared away.

I changed financial advisors about 11 years ago when we watched almost 30 percent of our assets take a dump.  We moved to a new guy who was a member of our golf club.  His book was comprised of mostly older folks but he made one very big impression on me.  He said, “Marco, on the investment side there isn’t much I can do for you that any other broker couldn’t also do. I don’t have a crystal ball.  But, because of my experience, I know how to handle probate, social security, and any other issues that might come up in the event of a tragedy.  I have helped countless people who were left floundering after a negative life event.  I promise that should anything befall you or Nita, I will prove why you chose me.”

I just had a meeting with him Wednesday afternoon and he was right.  He has been an avid blog follower and has been managing our stuff for a while.  In fact it was he that proposed I purchase life insurance outside of my employment.  He said, “You may not work there forever.”  Imagine if I had declined?

The numbers aren’t as high as they once were, because we’d been subsidizing my lost salary since last May, but he had a multi-step plan for Nita and the kids for when the time came.  He offered to stand in line with Nita at the Social Security office and help her through probate (although our wills are sound and were very generously discounted by a lawyer in my Aggie Yell group).  Parlay that with the amazing gift of a college trust offered by one of our dear friends and things are looking good financially for them.  There are two more pieces, one I cannot mention yet, but the other is the auction raffle.  We funded the wedding for Josephine and honeymoon for Connor accounts and with 20 years of growth (or more), those should turn out very nice for them.

So I came out of the meeting feeling pretty blessed.  I don’t know what my future holds and I’m sure the family would rather have me around, but I feel very much at peace knowing they will not be selling pencils or chiclets on the corner, noble a profession as those may be.  And I looked back and asked myself if I had honored my father’s words on what it takes to be a good man, good husband, and good father and I can honestly say I did okay.  I obviously made a ton of mistakes and did and said some really stupid things, but all in all, I give myself a strong B. 

I feel a little bad about baseball this year.  The commissioner keeps asking for volunteers to be head coaches, but I simply cannot commit.  I have NO idea what my travel or chemo schedule might be, or worse (we’ll get to that). I would love nothing more than to get out there and continue to teach these kids the fundamentals of baseball, being good sportsmen, good teammates, and good mechanics.  But I cannot guarantee that I’ll be available for any practice or game, much less all of them.

So here is what my dance card looks like.  On Feb 13, my buddy Lance will drive me to MDA for my EKG, anesthesia intake, and bloodwork.  On Valentine’s Day, I’ll be having the surgery.  The interventional radiology team will go up through my groin area and into my spleen.  There they will choke off a few arteries that feed the spleen to effectively kill a portion of it.  The goal is for the spleen to stop cannibalizing my platelets so they’ll rise above 100,000.  Luckily the recovery is supposed to be short but painful.  Work drugs work!  I think I’ll stay one or two days in the hospital, then they’ll release me home.  The following Monday, Feb 20, I’ll have to hump it back to MDA for bloodwork and follow up. My chauffer will be a wonderful friend from way back who I met in the political world. (I don’t have permission to use her name – will let you know if she’s okay with it). This should be a day trip, but the bloodwork will let us know if we’re over the 100K mark or not.  If that is the case, then we can start getting trials moving.  Leaving a better than average chance that I’ll be heading back to MDA the following week.

My oncology team here in Austin mercifully decided, with surgery so close, to suspend chemo until we can get a trial or see if the surgery works.  I am still feeling side effects and severe neuropathy, but nothing like it could be.  I saw a funny thing from a friend and have made mention of this before but it was referring to the fact that chemotherapy is in fact poison.  And it is.  One of the first jokes I ever heard in the oncology ward was, “if the cancer don’t kill ya the chemo will.”  And I believe it. By the way, for any of you acid reflux sufferers due to chemotherapy out there…if you still drink coffee – put honey in it.  It cuts the acidity and won’t make you gag.  You’re welcome.

Meanwhile speaking of dancing…last weekend was also the daddy-daughter dance.  Josephine’s two best friends (and a little sister) were also at the dance and we all had a wonderful time.  There was a lot more running around than dancing this year, but it was very sweet and I loved holding my sweet little princess and spinning and dipping her on the dance floor.  This I know I will miss.  I still get misty-eyed knowing that someone else will have her wedding dance in my place. I do hope that I get to watch from whichever landing spot in the beyond I may end up.

So back to sports, Connor did well enough in basketball last weekend that he earned the “MVP socks” (yes, they are clean). Tomorrow will be his last game and after we’ll have a little party.  After the party, Connor has baseball tryouts.  We’ve been doing a little practice around the house and might have a tryout simulation after school today.  Josie is just looking forward to hearing on which team she’ll be placed.  She loves the names of the teams and animals.  But as girly as that sounds, she has decided she wants to play “boy baseball” not softball.  My girl. They have both improved so much over last year. 

I’m mildly concerned about my ability to help in coach pitch.  The neuropathy in my fingers has taken a modicum of control off of my game.  I used to be a pretty pin point accuracy guy, now I’m more in a general range type of category.  I think I’ll still do fine (depending on what trial drug they give me) but we’ll have to see won’t we.  When the time comes, this is one of the things I think I will miss the most.  Watching them develop as athletes, or deciding it isn’t for them, either way.  The ride would have been nice to observe. 

I started making my top ten lists and writing birthday and anniversary letters.  I needed to go downstairs for another box of Kleenex.  Goodness, that was not easy.  But at least it will prepare me for the video so hopefully I won’t fall to pieces on that.  I hope these are received in as loving and helpful a manner as I intend them to be.  I don’t want them to be weird or spooky and it’s tough to predict what they will be up to or into, but we can all count on teenagers to be teenagers can’t we?  So those letters will hopefully resonate and maybe I’ll still have some stroke in the family to help keep the peace.

So the question on everyone’s mind.  What if?  I hear you.  What if the surgery doesn’t help? Then we take the containment drugs and run out the clock.  What if the surgery works and the trial drugs kill you?  Well that would be ironic and suck wouldn’t it?  But it is certainly a possibility.  What if the surgery works and the trial drugs cure you?  Wouldn’t that be a peach?  I would hope that I haven’t worn out my welcome and that there would be more rejoicing than those who are just reading along until the coup de gras.  The next two weeks will certainly be life changing (no pun intended – okay maybe a little) and will determine how the rest of the spring plays out. 

I’m still balancing in my mind what an acceptable time-away commitment is for this endeavor.  I haven’t found an answer yet.  Day trips I can live with for sure.  A couple of nights per month, maybe even per week are still tolerable.  But where is the fulcrum? At what point do I say, “Nope, I’d rather ride it out with my family than live at MDA as a lab gerbil on the hope that while figuring out dosages they accidentally gave me a life curing medicine?”  I do not know this answer.  I will pray for guidance and hope the answers are obvious when the time comes.

I’ve received two offers to come speak to classes.  One is a high school aged class and the other is college.  After my surgery, time permitting, I think I’ll hop on down to San Antonio and give these talks.  I still need to finish the book editing, but it is coming along nicely.  Goals and timelines certainly seem more urgent now.  I’m okay with that, I’m pretty good on a deadline.

So here we go campers. We can hope for the best, plan for the worst, or anything in between.  All I can say is that I have done my best to prepare myself, my family, and hopefully my friends for what may be coming.  I am at peace and I hope you are too.  Do not confuse satisfaction in preparation with giving up.  They are mutually exclusive.  I do not intend to give up this fight until I cannot go another round.  There are some circumstances in which the fight doesn’t make sense, but we’ll cross that bridge when we get there…but we’re planning for it anyway.  So I hope you fine folks have your wills in order, your plans are set, and may you never need them.  God bless you.  Team Marco.

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.