Back To The Hospital

Its been a looooong week.  First I can't thank everyone for the get well cards/notes, gift cards, helping at the house, prayers, and more this week.  Our warrior has been through hell and back.  From his liver enzymes being elevated, white blood cell count bottoming out, to poking and prodding, test after test.  What do the doctors know???  They don't.  The hard part is we just don't know because Tonys cancer hides and only offers symptoms. 

To sum it up, Tony went into the hospital Monday after a Duke ER visit that was suggested by his oncologist. Tony DID NOT look so good. He was in excruciating pain, low BP and labs were not pretty. On top of that he had finished a new chemo about a week prior and it was hard to know if what was going on was chemo or something else.

Tuesday morning he had a barium swallow study done that showed Tony has REDICULOUS esophageal spasms. Well DUH I knew that doc. That's not the issue. Tony had a dilated liver bile duct and his LFTs (Liver function tests) were a bit elevated. BUT with the power of God and prayer, they returned to normal in 2 days.

He had a scope done with biopsies Thursday morning and we hope to have the results next week.  The doctors are starting him on a new medication last night that should stop all the spasms that are going on from his esophagus down to his large intestine.  That may or may not be the culprit, but it can't hurt to try.  The drug will counteract any of the effects the opiods he is on for pain and initiate withdrawl from his gut.  Yes you read right INITIATE WITHDRAWL.

Its was a long night, but Tony is strong and was able to get through it.  If the opioids that they have him on have caused this, Tony should experience some relief in the next few days.  If not....well then I fear the worse....cancer spread.

At the end of the day, the good news is while he was in the hospital his blood pressure is now back to normal, he's hydrated, he and I have some one on one time and believe it or not, much needed rest. 

We hope to come home from the hospital today. Tony is ready and honestly, so am I. I know the kids are ready...its been a long week. I miss them dearly. If you're gonna be sick, and the docs can't fix it, we'd rather be sick at home.

So where are we....well we are just going to keep taking one day at a time and keep treating the symptoms. that's all we really can do. I trust our team of doctors, I just don't trust the data from the tests. That's a hard place to be in. I will write more later, but for now...this is where we are.

....Scan Results After The Break

Its been 6 weeks.  An interesting 6 weeks.  Lets start with the good news.  Our middle son Austin graduated from high school!!  BEST PART, TONY WAS HERE TO SEE IT.  This time last year, I wasn't so sure he would see Austin cross that stage, but he did.  The night he graduated Tony said, "Lord, please let me be here to see my little ones graduate."  Aydin and Ashton still have 8-10 years until those days come for them.  I listened to his prayer, and quietly thought, Thank you Lord for keeping him here for today.  Often times we forget to say thank you.  Thank you to our friends, and family.  Thank you to our doctors and nurses.  And often times, we forget to thank the good Lord upstairs for answering those prayers.

A week before Austin's graduation Tony was pretty sick.  We didn't understand why Tony was getting sicker when he was off chemo...except that meant the chemo was working and this break was allowing the cancer to spread.  So it was back to Duke we go.  They admitted him for some tests to include a spinal tap.  3 days before graduation we got the NEGATIVE.  The fear was that the cancer had spread to his spinal fluid...it had not.  But why was Tony still sick?

The weekend after Austin's graduation was busy.  Ashton's birthday, Father's Day, and Austin's grad party.  Tony hardly participated.  He was in bed most of the weekend.  My gut was in knots.  That Monday we went back to Duke.  Of course his labs looked great, but Tony, not so much.  Tony was very adamant about going back on chemo.  He said, "I know what happens to people who stop chemo.  This is my life we are talking about."  I had never heard Tony be so stern about his health.  The problem was though, he had maxed out his other chemo FOLFOX (5FU and Oxaliplatin).

I asked what would be next?  I was told Irinotecan.  "That's an older chemo right?" I asked.  And in fact it was.  I also said, what about scans?  Don't we want a baseline before we start a new drug?  We were told to come back the next day for scans and chemo.  UGH...driving and hour and a half home to drive all the way back the next morning.

The next morning while Tony was waiting on chemo, they did scans.  Tony started the new drug and within minutes started feeling horribly sick.  They gave him another drug which abated the side effects and he felt better.  All the meanwhile in the back of my head I'm thinking...what are the results of those scans.  What about that spot in his lung?  What exactly are we dealing with here?  Just as I emailed the doc, the results came in.  I couldn't believe what I was reading...the spot that had doubled in size from March to May in his right lung...WAS GONE!!!!  IT WAS A MIRACLE!!  I continued to read his scan...then I saw it, A NEW SPOT doubled in size on his left lung.  I immediately called his doc.  She explained to me that it could be inflammation but there is really no way of knowing and that we will just have to continue to watch it.  They use the term Wax and Wane.  I continued to read but nothing really to discuss.  Concerns I had was the slowing down of his bowels and some bile duct dilation which both can cause obstructions.  We don't need that right now...

Before I knew it, it was time to go home and it was time to share the next chapter of our journey with the kids.  I called them all into the living room and said, dads going back on chemo.  Matter of fact, he had it today.  Their faces all dropped and they just looked devastated.  I said its back to Duke every 2 weeks.  I want you all to be prepared he may lose his hair this time.  That hit them harder.  Its easier to pretend that Daddys not sick when he doesn't "look" sick. Alec was on a cruise so I wasn't able to tell him until today.  His response...WHY?!?!?!  He was not happy about the news. 

Aydin on the other hand has been doing lots of thinking.  The other night he was lying on the couch with tears in his eyes.  I asked what was wrong and he told me he's been thinking about what life would be like if daddy, well you know mom....died.  I took a deep breath, fought back the tears, and decided to share in his fear and acknowledge it.  I told him that even though none of us are promised tomorrow, that I too have the same fear.  I told him we can be scared together so that we don't have to feel this way or be scared alone.  He also asked me what Tony was like before he got sick.  What kind of daddy he was.  It really started to put more of his feelings and fears into perspective.  I asked the older boys to share stories of their childhood with Tony, with Aydin and Ashton.  These stories are important and so are the memories.

To sum it all up, I've also learned this is the nature of the beast of stage IV.  Some scans will be good, some won't be good, sometimes spots pop up, and sometimes they don't.  The truth is, I know there will be an end one day...but it doesn't mean I have to LIVE our life that way.  We wake up, we put BOTH feet on the floor, and we continue on with our journey.  What is the famous saying, Life is a gift, that's why its called the PRESENT.