Tuesday, October 15, 2013


With the PET CT and MRI behind me, this morning we woke up with great anticipation about the results.  I still had blood work to be done and a CAT scan too (nothing like scan overkill).  But today, October 3rd, was the day I would know if the treatments had worked.  My appointment with Dr. Frank was scheduled for 10:15, after his regular clinic hours.  We sat in the waiting room, watching as new cancer patients were called in to get fitted for their masks and old ones talked about their treatments.  One little boy in particular broke my heart.  He was crying as they wheeled him in, with the nurse trying to calm his nerves.  I had been away from this kind of heart break for 10 weeks, and in an instant we are so gently reminded of how precious each moment and each life is.  You could still hear his cries, but eventually we saw him rolling out with a smile on his face and lollipop in his mouth.  His parents still had a look of bewilderment on their faces, unsure of exactly what their future will hold.  I remember that look all too clearly.  This little boy was just starting his journey and I was hopefully close to finishing mine.

We spent the next 2 ½ hours just waiting.  One nurse had once said that the MD stands for ‘Most of the Day’.  So true!  This wasn’t like waiting in line for a fun ride, but was more like the roller coaster itself, with emotional hills and valleys, as my heart sank and rose with the anticipated possibilities of the results.  Would the ‘plum’ be completely gone, like the lady Dr. Frank told me about with a similar case?  Or would it be partially gone, more like a prune?  Or would the treatment have not worked at all?  The only acceptable option in my mind was that it would be completely gone.  But there was something telling me that wasn’t the case.  When they finally brought us back to the room, we waited a little longer.   I could hear Dr. Frank and his Nurse Practitioner Meaghan whispering outside my room, which made me a little nervous.  I tried with all my might to hear what they were saying but it didn’t work.  He walked in with a smile on his face, which was normal for him.  He gave me a hug and asked how I was.  I told him that depended on him!  He proceeded to tell us that based on the PET CT it looked like the majority of the tumor was dead.  Praise God! OK, but majority doesn’t mean all.  He then proceeded to tell us that there were still some areas that were lit up on the scan, which could mean that the edges of the tumor just haven’t died yet.  Or, it also could just be inflammation.  There was no way to distinguish the difference just yet.  So, we would just have to watch and see what the next set of scans had to say in 3 months.   He said he was very pleased with the results.  He was thrilled that my vision hadn’t been affected.  He was pleased with my recovery and the way I looked.  I told him that if he was happy I was happy.  But if I’m going to be totally honest, I never got that moment that cancer patients hope for when their doctors tell them they are cancer free.   I didn’t jump for joy at my results.  I didn’t cry tears of any kind.  I took the results as a matter of fact to be dealt with.  I still have a large tumor (albeit a mostly dead tumor) in my sinus cavity, and I don’t know if there are still active cancer cells on that tumor.  I have a large hole in the upper part of my jaw, and an exposed bone that the dental oncologist will be looking at later.  Now I just sound like a whiny baby, ungrateful for the so many answered prayers presented before me.   Forgive me, Lord!  Psalm 30:2 Oh Lord, my God.  I called you for help and you healed me.  This is the absolute truth I need to focus on!  Just because I wasn’t healed the way I wanted to be (with it completely gone) doesn’t mean my prayers weren’t answered!

With relief in my heart about the tumor, we headed to see Dr. Hofstede in Dental Oncology.  That is the one place where we don’t have to spend too much time waiting.  I explained to her about the exposed bone in the roof of my mouth and the hole in my upper jaw, and she proceeded to take a look.  The exposed bone was necrotic, and the large hole also had exposed jaw bone.  She noted that it appeared to have a serious infection caused by the dead bone, and I would need to start an antibiotic rinse immediately and a 2 month regimen of 750mg Levaquin antibiotics.  She said that we could possibly make some sort of retainer type of gadget to keep food from going into the hole.  But, with my limited mouth opening (about 8-9 mm) it would be near impossible to get a mold.  She is ordering a contraption called a Therabyte which should help me exercise my jaw and hopefully increase the trismus.  After leaving, I was still uncertain as to how this would be fixed or when, but in due time, I guess.

 After an exhausting day at the hospital, we decided to head to the hotel bar for a celebratory drink (we were too tired to go out somewhere).  Again, I didn’t feel the exuberation that I had hoped for, but knew we needed to celebrate the victory!  I ordered a cosmo, Will ordered a beer and we toasted to the results.  I haven’t had anything to drink really since the beginning of June (a couple sips at most), and I have to admit that it really didn’t taste all that great (never thought I would say that!).  The alcohol also burnt the exposed areas in my mouth and my tongue.  But it was my celebratory drink, darn it, and I was not going to give up on it!  After an hour or more, I got it down, but was happy to call it quits at that point.  But I got a picture and sent it to some of my girlfriends, so they could see me celebrating. 

The next morning we woke up leisurely, not having to meet with Dr. Hanna until 12:00pm.  As I was getting dressed, Will called me into the TV area to show me that our Lake Travis HS band was on ESPN’S Top 10 Worst plays of the Day.  Their tuba section has become somewhat of a cult celebrity, after a 7 tuba pileup during a football game halftime show.  They’ve been on World News, Today Show, Jimmy Fallon, ESPN, etc.  This made me smile! 

I wasn’t nervous today at all, having already been given the results by Dr. Frank, and saw this meeting with Dr. Hanna as more of a follow up.  The ‘MD’ (Most of the Day) definitely rang true today as we waited 3 ½ hours to see Dr. Hanna.  At first the frustration was visible on Will’s face, but I saw it as an honor that we get to see a doctor who has patients from all over the world that come specifically to MD Anderson so he can treat them.  It’s true too.  The waiting room looked like a sampling from EPCOT center with so many nationalities represented.  A reminder that cancer strikes whoever, whenever, wherever it wants. 

Once we made our way into the room, I was briefly assessed by Dr. Hanna’s resident.  After a bit, she returned with Dr. Hanna and two Italian doctors who were studying alongside him.  He asked how I was.  I proceeded to tell him that I had been feeling really good, trying to walk 3-4 miles 3 times a week.  He then asked Will how he thought I was really doing.   Will replied the same way, saying I really was doing well.  It wasn’t until this past week that I got really tired, which we determined was from my body trying to fight the infection.  He also commented on how good I looked, and I turned to the Italian doctors touching my right cheek and said, “I know, aren’t I pretty?” I just have these moments of silliness that seem to break the ice when it’s needed.  Dr. Hanna said, “I can’t argue with how you say you are feeling or how you look.”  I felt a BUT coming on.  He proceeded to talk about the MRI results and how the tumor changed color, but he couldn’t tell conclusively what that meant.  That the tumor was still there...we knew that.  That there were no surgical options for me…which he’s said all along.  That nothing he could do as a surgeon could help me, but only hurt me.  That we would have to monitor it...we knew that too. I wasn’t exactly sure what I was hearing or exactly what he was saying.  It didn’t seem to be as positive as what we had heard a day earlier.  Luckily I was still clinging to what Dr. Frank said, and heard this conversation much differently than Will did.  He then said he thought it was too early for a PET.  Something triggered in my brain, and I spoke up and said I had a PET 2 days earlier.  The resident had failed to give him all pertinent information and test results before he assessed me.  He looked quite surprised, and immediately pulled up the PET results (I’m guessing someone got in a bit of trouble over this SNAFU).  As soon as the images appeared, the sweet face of one of the Italian doctors smiled and gave me an emphatic A-OK sign with his hands.  The roller coaster ride continues.  With this information, Dr. Hanna then proceeded to tell me that the lit areas were most likely just inflammation from the infection, and that this type of tumor will usually die homogenously.  All or nothing.  So now the news about the tumor ends up being even better than we thought.  But the issues inside my mouth are ones that will take time to figure out.  The dead bone will need to be removed.  My journey is still far from complete. But I’m a better person for the journey.  I’m grateful for the journey.  It has brought me closer to my Savior.  Romans 12:12 reminds us: Be joyful in hope, patient in affliction, faithful in prayer.  These are the things that have gotten me through to this point in my journey and will continue to carry me through regardless of what lies ahead.

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