Daniel's Update #2

I would imagine that everyone making the decision to begin chemo and radiation treatments has hope but, in Daniel’s case, he believes that he will beat this like he’s beat all his other life-threatening ailments in the past; and I believe him – he’s like the Energizer Bunny.  Those who know Daniel know that he’s been handed the short end of the stick more than once when it comes to health.  I’ve written in the past about Daniel’s various challenges and how he keeps moving forward despite odds. A friend recently said, “Daniel’s just a lemonade kind of guy, isn’t he?”  Yes, he is, and he’s always been that way.  This time should be no different,

At last writing, Daniel was about to begin his first full chemo session and the following Monday was to meet with the radiology oncologist for the body mapping that they do to target the affected area; in this case, the esophagus.  The mapping session is interesting as they put a tattooed dot in certain places where they then place a “bulls-eye” adhesive circle to line up the radiation points for each of the 28 scheduled treatments.  He had two radiation treatments along with an additional two chemo treatments and he seemed to be handling those without the issues as stated above.  The downside is that most recently, he’s been admitted to the hospital 3 times due to other complications – mostly due to extreme low blood pressure as well as frightening sugar levels in the low 30’s.

The first hospital visits since returning home was of course to place the power port in his chest for both chemo and blood draws as well as for the feeding tube that goes to his stomach.  That’s so we can bypass the tumor in the esophagus for nutritional purposes until radiation can shrink it down.  It’s been all experimental with food going down by mouth and even the doctors had gone back and forth between clear liquid and full liquid diets for him.  At one point he could have pureed foods, but the doctors quickly changed that to avoid any chance of aspirations.  Aspirations?  Why would he be aspiring?  Well that required another test which wasn’t done until his third hospital visit described later.

There were no complications with the first hospital visit so onto the second.  After his second radiation treatment, while driving the 30-minute distance to his following scheduled chemo session, Daniel became drowsy in the passenger seat.  I wasn’t concerned as it’s typical for him to nod off while I’m driving.  I found a parking spot at our destination and that was the easy part – keeping Daniel awake and holding him up while crossing the parking lot was a challenge.  Somehow, we made it to the front of the medical building where I got him seated in front of a Subway sandwich shop.  I went inside and bought an applesauce and Gatorade thinking it would bring his sugar and electrolytes back up.

When I returned from the store, Daniel’s head was on his arms and he was asleep on the table.  I got him to wake up and eat some of the applesauce which was in a squeezable packet and a few sips of the Gatorade.  This was enough to give him the energy necessary to get upstairs to the doctor’s office.  We were basically on-time for the appointment and as the front desk receptionist saw his condition, the nurse came and took him to a room where she checked his vitals.

When the doctor entered, she stated that she was most concerned with Daniel’s blood pressure and sugar levels which were both very low.  Thinking he may have an infection in his bloodstream, she convinced him to check into the hospital for some testing.  That way if needed, they could administer a wide spectrum antibiotic to clear up any infection much faster than if he were at home.  In addition, the results of the PET Scan had returned and as she reviewed the results along with us, it showed some additional areas where the cancer may have spread.  The word “may” is a gentle way of saying “has.”

The PET Scan showed a nodule on the pancreas which is of most concern.  There is an additional spot appearing on his right vocal cord and maybe something showing on his lungs but that could be tissue damage from the recent aspirations he had experienced.  While at the hospital, Daniel’s doctor brought in a gastroenterologist to biopsy the nodule on the pancreas.  After it was performed, the results show that Daniel has two primary cancers going on at the same time – Esophageal and Pancreatic cancer.

The treatments for each of the cancers is conflicting as the chemo that works on the pancreas does not work well with radiation and, radiation is needed along with a different chemo to shrink the tumor in the esophagus so Daniel can eat and drink.  Currently, the channel in his esophagus is too narrow for food to pass unless it’s pureed, and a swallow test taken during his next hospital visit reveals yet another complication concerning liquids, but we’ll cover that mess later.

Daniel was discharged from the hospital after 5 days.  His return home only lasted two before he was readmitted by way of an ambulance.  Daniel went septic on us and we almost lost him.  He most likely caught an opportunistic infection during his last visit, but you’d never get the hospital to admit to that.  I guess I’d never really understood what it meant when someone went septic, I had to look it up on the Internet to find out it’s not an internal poisoning but rather an infection in the bloodstream that spreads into the body’s organs, thus shutting them down.  But Daniel didn’t have the textbook symptoms; he was not running a fever, he was not lethargic, he had been happy and filled with energy ever since returning home from the hospital.

The evening prior to calling emergency, the two ladies who live next door invited Daniel to attend a catholic healing/anointment mass that was being held at their church.  Daniel is catholic and he really wanted to attend this mass, so we did attend, and it gave him comfort to receive the anointment blessing.  After mass, it was slow moving back to the car as he had-had a busy day starting off with a radiation treatment, a trip to Walmart for some new clothes to fit after losing so much weight, and then us attending this mass.  It was too much for him together with whatever infection was brewing in his bloodstream.

After arriving home from mass, I was able to convince Daniel it was time for bed as we were going to have a busy following day with a radiation treatment scheduled in the morning.  He slept soundly through the night and I could hear him occasionally snore.  I was up earlier and debated with myself how long I should let him sleep; his breathing seemed normal as did his temperature, yet his arms were cold.  I put a blanket over him and let him continue to sleep.

Once admitted to a room, the goal was to figure out what caused him to go septic.  It is suspected that once again, an aspiration backing up into his lungs caused an infection.  The treatment that followed was massive amounts of a wide-spectrum antibiotic but what caused the aspiration if that’s the diagnosis?  Food intake is obviously the culprit and between the oncologist and the hospital’s dietitian, Daniel’s diet is changed multiple times between clear liquids, full liquids, and small diced foods.  That’s when they finally schedule that swallow test mentioned several paragraphs back.

The swallow test revealed that the aspirations are being caused by liquids not going down the right tube.  Daniel’s trap door isn’t working correctly unless there is bulk weight heavy enough to push through to the esophagus.  As if he didn’t have enough to deal with – right?  Evidently, this is not all that uncommon as there is a product to thicken one’s liquids from light to heavy nectar consistency.  It’s called “Thicken Up” and it does what it says; think about that for a minute – having a clear glass of water the consistency of nectar – how refreshing!

Not knowing if this swallow thing is a temporary or permanent situation, the oncologist has taken Daniel off all food by mouth until he completes all his radiation treatments.  This isn’t so much for the swallowing problem as it is she wants to prevent any further aspirations while giving the radiation time to shrink the tumor’s size in the esophagus.   This will allow widening of the channel so regular foods can pass through to his stomach without blockage which could also cause aspiration.  He has completed half of his radiation treatments thus far.  We can deal with the thickening of liquids issue later and, evidently, the same way millions of other people do – with Thicken Up; yuck.

Daniel’s been home now for a couple of weeks and although he’s supposed to be taking it easy, he has his new power chair and you can’t keep him down.  He’s already gone shopping with his best friend a couple of times buying new things for the house as well as a Halloween costume he bought just before the holiday.  He found a wardrobe selection at some costume shop in town and created a Steampunk persona – it was awesome, he looked like a character straight out of Sgt. Pepper’s.

It’s only been 2 months since Daniel went to the Mt. Sinai emergency room.  I last wrote an update toward the end of September and everything that you’ve read here has been his October.  A lot has happened however, I expect things to slow down and normalize now that all the testing and diagnosis of the various ailments has concluded.  Hopefully we can now just focus on treatment.  Yes, the last hospital visit was a scary one, but it’s not expected to repeat and whatever infection he had in his bloodstream was more than likely contracted during the hospital stay when they performed the biopsy on his pancreas.

I will try and update the good days more often and now that we expect less drama – the unexpected additional complications and the testing and diagnosis that occurred – the updates should be less lengthy – and hopefully filled with more fun things we do.