2011 Summary (so far) and 2nd Surgery update

Wow, it has been a while since I have done an update. Perhaps no news is good news? It's been so long I'll do a brief summary of 2011 with regards to Carl's medical journey. I'll start with December, just 'cause.

Dec 27-Dec 30, 2011 Carl had inpatient Chemotherapy at Froedtert. They let him out one day early so that he could enjoy New Years Eve and Day with his family.

Carl had the hardest time recovering from this particular chemotherapy, and pain increased in his neck. The Doctors decided to operate on his neck to stabilize his neck and debulk the tumor, and the neck surgery was done on Jan 24, 2011. Carl was sent home from the hospital wearing a neck brace, which he wore for 23 plus hours a day, except in the shower, for weeks, and instructions not to drive.

After the surgery Carl was recovering (sort-of) but then the pain in his neck was getting worse. The surgeon saw Carl, took an X-ray, and determined that Carl's spinal fusion had failed, and included a screw pulling out. Carl had an emergency surgery on Feb 14, 2011 to repair the failed hardware. On this surgery they pulled out the screws and put in larger screws, used acrylic glue and more hardware, and fused Carl's neck from the base of his skull to C7.

Carl was released from the hospital on Wednesday, February 16, 2011. After a week or so, Carl felt good enough to start working again, although with reduced hours. Again, Carl was sent home from the hospital wearing a neck brace, which he wore for 23 plus hours a day, except in the shower, for weeks. He won't be able to drive a car for at least six weeks.

Life with the children, of course, continued, and the weekend of Feb 25-27, 2011 was particularily busy. Anthony (a freshman) was in a great musical for 4 days, Miranda (6th grade) was in forensics, and the three younger children had a piano recital, and poor weather made some things more difficult. We survived the activity, but Carl overdid it that weekend. The funny thing about overdoing things is that "hindsight is 20-20". After you overdo something, you know that hey - you overdid it, you shouldn't do that. But by then it is too late. Fortunately, Carl survived, with no ill effects.

The 2nd surgery's spinal fusion has lasted longer and worked better then the first surgery, so far. On Thursday, March 10, 2011 I took Carl to see the surgeon for a post-op appointment. Carl had an X-ray and the surgeon said things look great. He even said Carl could start wearing the neck brace less (an hour or two each day), and that Carl should start PT (Physical Therapy) next week.

This week, later today, in fact, Carl will meet with the radiation Doctor, and 'the doctors' will start planning the next link in the chain of treatment.

Christmas Treats

We last left off December 22, 2009, the happy day where Carl got his port placed. Many of these fun new terms (ex. port) will be defined in later posts.

• 2009 Dec 23, Wednesday:
  • We woke up calm and relaxed, a plan (and port) in place. We got the children off to school.
  • Carl was showered and dressed, ready to go to work for a nearly full day.
    
  • We get a phone call. Would we like to meet with the Radiologist? (by the way, TODAY?)
    
  • 11:00 AM Meeting with the radiologist.
    
  • The thing in your neck concerns us... (what thing?) Remember the PET scan on December 18? The first Scan including the head? Guess what...
    
  • 1:00 PM Hi tech custom device to immobilize Carl's head and neck for radiation created (for photo see What Radiation looks like.)
    
  • CT simulation of radiation to neck area done.
  • I left Carl at Froedtert to collect the children from the last day of school for the year 2009.
    
  • 4:00 PM Carl got Radiation #1 (of 10) and was driven home by friend. (see What Radiation looks like)
  • The treat in treatments are starting, before Christmas even.
    
  • 4:50 PM I got a call from an anguished Anthony. He was hurt at wrestling practice.
  • 5:15 PM Carl home from Radiation #1.
    
  • 5:40-7:45 PM Mom and Anthony at the urgent care facility, X-ray shows a totally broken collar bone with the two pieces of bone not even close to touching.
    
  • 8:30 PM Pain medication prescription filled for Anthony and Carl.
    
  • Lots of Christmas snow coming down.
  • Children at home with Carl put up the Christmas ornaments on tree (front side only).
    
• 2009 Dec 24, Thursday:
  • The children slept in at home - no school.
  • 8:00 AM Carl got Radiation #2 (of 10) at Froedtert Hospital in Milwaukee, Wisconsin.
  • Carl got a neck brace. (You have to be kidding, right?) After Carl indicated he was unlikely to wear the neck brace the nurse told him that one of his vertebrae had some bone that was partially missing... You don't want to be paralyzed, do you? (answer, nope, and Carl doesn't want a sarcoma either.)
    
  • New song invented. "It's beginning to look a lot like cancer, Every-where they look..." [Sing to the familiar Christmas tune.]
  • We went home and collected the children. They enjoyed the non-stop screen time while we were gone very much.
  • Christmas Eve Party with family on my side of the family. Carl moved his head carefully and didn't wear the neck brace. He figured he would risk paralysis for one more day.
    
  • I went home and Carl and I went to bed. Carl slept with the neck brace on. I sighed, then got up and wrapped the presents I had and put them under the tree.
• 2009 Dec 25, Friday:
  
  • Santa left precisely 5 wrapped presents under our glowing (1200 lights!) tree. This does not compare favorably to the bounty from previous years. The children did NOT let us sleep in, and one present WAS open before all the family was assembled.
    
  • The children still had a good Christmas anyway (It's not like we don't have any toys, after all), and a Shopping Spree Day for Saturday was discussed.
    
  • Christmas Party with family on Carl's side of the family. Carl wore the neck brace. "Let the Freak show begin" Carl said as he walked in with his neck brace and cane. OK, this is not a great thing for Carl to say, and I probably should leave it out, but it's what he said, it's what he felt, and it's what I report here. Carl thinks he will blend more once his hair falls out.
    
• 2009 Dec 26, Saturday:
  
  • Shopping Spree day with family and Uncle Paul. We got the children pretty much whatever they wanted [but alas, no XBOX 360, Anthony's dearest wish. Had the progress reports of multiple children shown more (some?) progress...]
  • Lots of snow falling fast does not dissuade shoppers.
    
  • Parking was atrocious at the stores and malls. Even handicapped parking was very full (Carl got a temporary disabled parking sticker with the cane). Carl thinks they must be giving temporary disabled parking stickers out to anyone who asks. (OK, lots of the humor going around is kind of dark at the moment...)
    
• 2009 Dec 27, Sunday:
  
  • 11:00 AM Church service. (Carl, with neck brace and cane attracted some welcome attention - I love my church family! Thank you all!)
    
• 2009 Monday Dec 28, to Thursday Dec 31... :
  
  • 7:30 Carl got Radiation
    
  • 8:00 Carl got Chemotherapy
  • Carl did other tests, labs, appointments...

Christmas and December 2009 will be remembered like no other... Each day of Dec 28, Dec 29, Dec 30, and Dec 31 were their own mini adventures... But I am now tired and will post this post, and I will have covered 2009. Sort of.

Happy New Year to all. (This I mean sincerely).

This is the first year in more then 15 years that I have not had my Christmas cards made and sent out before the New Year started. Something else to do in January 2010. I must make the cards, and I must get the photo, before Carl's hair falls out. After all, I scrapbook my Christmas cards into my Christmas Album. For that reason alone, if none other, I intend to create the Christmas cards, and send them out! [Note from May, 2010: I never sent out Christmas cards for 2009]