Close, but no cigar

Close, but no cigar

I think most of you felt the sense of urgency in last week's blog and realized that quite a lot was riding on my test results from this week.  It started off rough with our first appointment being at 6:00 AM and our CT check in time at 5:30 PM (only to find they were running 1.5 hours behind when we arrived).  Anyway, the phlebotomy tech missed both arms and had to send me to a more senior blood taker.  She finally hit the tap and got her 10 vials of blood.  I immediately went to the infusion department so they could run a line to my port o catheter.  At least no more arm sticks. 

6:30 AM and trying to keep a good attitude

After the port was accessed, we went to the Clinical Trial Research Center (CTRC)…where they took another 11 vials of blood.  It occurred to me that perhaps I’m not losing weight so much as I am being drained of all my fluids.   After this, we hopped back on the elevator to go get an EKG.

Now as we discussed last week, I’ve been having shortness of breath and my oxygen saturation levels were lower.  Just barely low enough to qualify for home oxygen.  I don’t use it a lot (don’t need it a lot), but it is nice to have just in case.  I even purchased a little home Pulse – Oximeter device which you put on the tip of your finger and it measures your pulse and your Oxygen saturation.  You want it to be around 97 or higher.  Mine has been hovering between 91-96 based on activity.  When I do anything strenuous, like walk to the bathroom and back…it drops to 91-92.

Wednesday, we met with the intake nurse and the doctor.  Everything on the bloodwork was good.  The CT scan did show growth in the lungs and that it was actually choking off portions of the small airways in the lower lobes (it was weird seeing the constricted airways on the CT images and definitely showed what we are up against.  This is what has made it so difficult to take deep breaths, open the airway, and get a lot of oxygen into my blood stream (which is what we all need).  At this point the doctor was hesitant.  He said that he didn’t want to put me in the trial if my lung capacity and oxygen reserve were not strong enough to handle it.  To give you a sense of what it feels like, remember when you were younger and you ran in the summertime until you couldn’t catch your breath?  Then that hot air filling up your lungs just burned until you finally cooled down?  It’s like that, but without the heat.

I brought up the irony that if we didn’t do the trial, that my lungs would eventually be taken over and shut down by the cancer anyway.  He fully acknowledged what I was saying but said he has two responsibilities. The first and foremost is to my safety, the second was the study.  He conferred with the lead doctor of the study and they asked the nurse to “walk me” around the hall, while measuring my oxygen saturation.  With just a non-vigorous walk my saturation level went from 94 to 92.  The baseline for the study was 94.  Currently, I’m out.

Back to the “what could go wrong” portion.  Well apparently, a lot.  This is not chemo, it is immunotherapy.  The doctor stated a few main points.  First, with my current lung capacity and reserve, any type of pulmonary hiccup could be fatal.  By that he means that you go on a ventilator until someone says “enough;” not exactly how I pictured the ending.  But Pulmonitis is a realistic side effect.  People with healthy lungs can withstand a little discomfort while things settle down.  I cannot.

Another issue with the immunotherapy is that the drugs get in your system and stay there for months.  You can’t just flush it out, they are there for three months once introduced.  So if the damage starts early, you are screwed (in my situation – which is why they have a benchmark for oxygen sat among other indicators). Additionally, the cure does not happen overnight.  If it is going to work at all, it will take some time to ramp up and start killing the cancer.  Finally, the study sponsors expect that each patient has a reasonable expectation of being able to finish the study over the course of 56 days.  Yep, two months.  In my current condition, with the current trial medication, there could be no reasonable guarantee that I’d still be chugging along on day 56.  Not that I would necessarily be in the back of Robert’s Hearse, but rather that they’d have to halt my study for hospitalization or some other reason.

Finally, immunotherapy attacks all the organs with the immune system.  It isn’t targeted like some of the FDA approved drugs, so you could technically jack up your kidney when nothing was wrong before, and as previously mentioned, it is tough on the lungs.

Dr. Kee, Nita and I went over several options and then another cropped up, so there is no reason to completely lose hope at this point.

1.       I am to come on Monday April 24.  I am still on the trial schedule for the whole day.  If after meeting with Dr. Kee my oxygen saturation levels are at 94 or higher, then they’ll let me continue with the study.

2.       Lonsurf.  It is an oral chemo drug that has similar side effects to Fulfiri.  It is not as effective as Fulfiri and is usually used as a containment option.  (More on this later).

3.       FulFox.  Yes, I know I had an allergic reaction to it.  But it was effective.  Dr. Kee said there was a way to very slowly introduce the oxaliplatin into the body and is almost a 12-hour procedure, but it makes it safer without losing the efficacy.

4.       As we were leaving, I got a call from another clinical trial office.  I couldn’t hear them over the noise in the cafeteria, but they scheduled a meeting for me on Monday.  I think the intake nurse (who was a little shocked that I wasn’t let into the study) reached out to a peer to get me another option.

So these are my options.  When I questioned the Lonsurf option, Dr. Kee matter-of-factly stated, “Remember, Lonsurf has already been FDA approved and has gone through trials.  It is both safe and effective which is how it made it to market.  Betting everything on a phase 1 trial with no data of success yet, is still a big gamble. For the Fulfox, we’ll have to see if the Austin office has the resources to do a 12-hour infusion, most don’t have office hours that long.  I have a meeting with my Austin team on Thursday to see what they can do and what they recommend.  What we do know is that we have to do something, and quickly.

Here is the worst part.  The kids are 100% in tune with what is going on.  Both were hanging their hats on “daddy getting this new trial which will cure him.”  We never overtly said it, but it may have been implied as to why it is so important that I keep going to Houston over and over again.  Both are worried sick about me.  It must be hard with all the new equipment in the house and my appearance.  They have never seen me this thin or ineffective.  Plus, kids notice everything.

The game face has been gone for a couple of months.  Once I was unable to pitch Connor’s games, attend the campout, and had to stay home for simple neighbor’s night out dinners, they knew.  The constant barrage of coughing, hacking, and the equipment in the house make it impossible to dismiss as normal any longer.  But I gave it the old college try for about a year and a half.

Josephine puts two and two together as well as anyone within four years of her age.  She has already figured out that we’re in a desperation mode to find something to stop the progression of the cancer in my lungs.  Connor, bless his heart, was late to the game but it is hitting him very hard.  Wednesday night when I was taking him to his baseball game I asked him what was wrong?  He said, “nothing.”  I asked him was he worried about something?  He said, “YOU DAD, I’m worried about you!”  Well what do you say about that?

We started having them see people they could talk to and we’re definitely going to stay on that schedule.  Now if only my mother will do the same.  She is so concerned about me right now and has no outlet to vent or just help her organize her thoughts.  We have asked and pushed, I hope she will make the call and do it.  It will help more than she knows.  I spoke with her on Thursday and she seems ready to take the plunge now.

As for me, I’m not giving up.  Not at all.  But you do have to look back on the last year and wonder about the amazing timing of events.  Last summer we went to South Padre and to Breckenridge on subsidized trips.  Then, a quick date trip to New Orleans, just Nita and me. Then a few months later, a birthday bash in Vegas where we hit the mini-jackpot.  Then there was the living wake in December which was nothing short of spectacular.  Finally, in January our crew as well as Without Regrets funded a trip for the family to go to Maui!  One month later I was in the hospital getting the spleen surgery, two weeks after that – Pneumonia, now the cancer has grown in my lungs and there is no chance that ANY of those trips would be possible now.  Like Dr. Kee said last summer, “Do what you can when you can.  Certainly, don’t put things off.”

Thursday, Nita and I met with Dr. Netaji to go over the options we were given at MDA.  Well, he poo-pooed the trial pretty quickly.  Without going into every detail of the discussion, immunotherapy takes a long time to take effect.  So, while we’re waiting for the immune system to crank up and figure out what to do, my lung mets would keep growing and choking off more of my airway.  Plus, no matter the optimism, it was still a phase 1 trial.  When I was healthier, this was a viable option.  Now that I’m not, it isn’t.

We ultimately decided to go with the FulFox again, in a diluted longer infusion method/protocol.  It had shown to be effective, works relatively quickly, and frankly I’m about out of options.  We actually need chemo now and not something that will “eventually” take effect.  If you remember, it was working quite well until my reaction to it.  And once we start Lonspur, we can’t go back to the FulFox, so we have to do this in order.

So I still have to head to Houston on Monday to meet with Dr. Kee and sign the new protocol.  Plus he said I needed to start a steroid prior to the FulFox infusion.  Since it is a 12 hour procedure, we're going to do the first one or two at MDA, then see if we can replicate the recipe here in Austin.

If for some reason the FulFox doesn’t start making headway then we’ll switch to the Lonspur and call Hospice.  Unfortunately, the lung mets have progressed to a point that if the Fox doesn’t work, we might be out of options to stop it.  I know this isn’t what anyone wanted to hear, but I’ve been open with you folks throughout.  I will continue to fight, but I have to recognize the situation for what it is.

Physically, there are some things in my system that just plain hurt.  To add insult to injury, I think I even strained my left pec just tossing pillows or luggage around.  But that only adds to the pain of a full deep breath, my left rib cage, and other little aches and pains.  I have pain meds and that seems to control them mostly.  It helps while I am waiting to catch my breath; frustratingly after just doing the most mundane things.  However, I’m pushing myself a little to see if I can open my airways and expand my lungs.  Not sure if it will work, but I’ll keep plugging along.

Where is my head?  Well, we all knew the statistics and I was never told that there was a cure.  I had hoped for more time; and may very well get it.  But the document I signed showed 23.7 months median survival rate.  That would put us around August 15.

Before the second of three Easter egg hunts

At the same time, I cannot feel bad about the amazing life I have lived, the experiences I’ve been able to have, my loving wife and children, and my upbringing and youth.  I have really led a charmed life and I have no regrets.  I will continue to fight with every last ounce of energy and who knows, there still may be a miracle around the corner.  But as I said last week, a bit over two thousand years ago I was given the gift of eternal life.  I’m going to be okay.  Nita and the kids are strong, but may need a hand.  Let’s just pray there is still some magic in the FulFox.  God bless and wish us luck.  TeamMarco.

 

Aside: on the way back from Houston, Nita told me about the surprise party that was supposed to occur on my birthday.  Instead I was hospitalized, but wow am I flattered by the responses.  Thanks to all of you, it was quite touching.  Sorry for being the party pooper.