Alan’s Army

Hi all,

John, Liam, JB, Missy, and Todd all came out and helped finish a cement job for the new C-pin for hole #9 at Tyler today. Alan and I had mixed and set 640 pounds of cement with rebar for the base back in April, but then the tumor happened. Today we put another 560 pounds of cement into a pedestal form made out of an inverted 36 gallon rubbermaid trash barrel and now its time to just sit and wait on the cement to dry and make sure none of the knuckleheads mess with it. I’ll wait to dark to leave and it should be fine overnight unless it’s the whitetail deer that are the vandals.

Its reasonably cool under the tree canopy and the breezes feel good. I brought a folding chair, a jug of ice water, cigars, and a book; so I’m pretty much on vacation. Before starting the latest adventures of the Corleone family (Godfather’s Revenge) I figured it was time to get another update out to you all. (Have blackberry - will write.)

Alan is at home enjoying the pool after church, and I understand that Gina is over.

Alan has now had 5 radiation treatments (M-F) and last night was his 6th set of chemo pills. So far he has had no issues with nausea so it looks like he is in the 90 percent of people that tolerate the Temodar well. The radiation has a cumulative effect so we shall have to wait and see. The steroid taper finished last night so we shall see how that affects his appetite. Hopefully the voracious appetite from the steroids will only drop-off to a regular appetite, as one of the other possible side-effects of the chemo is appetite loss. It probably won’t be an issue; after all, he is Alan, son-of-Big-Dog.

The next five days of radiation start in the morning, and on Wednesday we have a follow-up visit in Newark with the Neuro-opthamologist that did the Optic Nerve Fenestration surgery.

Alan’s Army wristbands are selling like hotcakes which is good as Ginny noted yesterday that Alan’s insurance has already hit the annual limits, so the rest will be out-of-pocket.

Gina has a fundraiser pasta dinner in the planing stages as well. It will be at the Montgomery Evangelical Free Church in Belle Mead, NJ on August 7th. More details to follow.

Thank you all for your continued support.

God Bless,

Andrew

Alan just had his third radiation treatment and last night was his second day of chemo.  So far he has had no issues with nausea at all.  Its probably too early to get too excited, but at least early indications are that he is handling radiation and chemo well - let’s hope it continues.

One possible side-effect of the Temodar (chemo) is loss of appetite.  So far he’s been eating like crazy - a steroid side-effect - let’s hope his appetite continues post-steroids which taper off this week and end on Saturday.

Thanks for your continued prayers and support.

Love,

Andrew

BTW - A new web-site for these updates and replies in a blog layout is just about complete.  The Alan’s Army wristbands are also in and will be sold to support Alan’s medical expenses at Disc Golf League, at work, and through the website.  More on this to follow shortly.

Friday:

Happy 4th!

A lot of lazing around occurred.  I slept in until something like 8AM - what a lazy bum!

Walmart is wide-open but sure enough the pharmacy is closed.  Thankfully we have enough various bits of Decodron (steroid) leftover from previous scrips to carry Alan over to tomorrow.  His new tapering schedule will take him to next Saturday.  While at Walmart I picked up a cassette tape player so he can use some of the books-on-tape people have given him.

Saturday:

Eric Robbins came over and we took Alan up to Liberty Corner to play.  We only played six holes and Alan was done.  The humidity is simply off the charts.  He said that he couldn’t see as much as the last time (it was bright and sunny last time) and as good as Eric and I were, BOB was much better at setting him up on the tee and describing the shot he needed to make.  On the way home we stopped and picked up Alan’s prescriptions at Walmart - $282 - ouch!

Sun:

Alan and I went to the Rutgers course to lend a hand to BOB and Kit at the Jersey Jam warmup.  It was only about 80 degrees but the humidity was off the charts and you could see the air.  We sat under a tent at tournament central and an occasional breeze was a blessing.  We could see four holes from our vantage point and I gave Alan the play-by-play.

A drop-out would have left Kit and Hope to play by themselves in the second round so I borrowed 5 discs and played with the ladies.  I didn’t do that bad considering the lack of my own discs.  The Gateway Magic that Mac lent me was actually a pretty nice upshot disc but I really missed my pro-line Rhyno for putting.

It got a bit boring without me to tell him what was going on so Alan called his mom and Ginny came and picked him up.  After the tourney the McGinley family, JB, Missy, and niece Caitlyn (who didn’t go to Maine) came over and we ate an egregious amount of pork roll, hamburgers, hotdogs, and cheddarwursts of the grill.  Afterwards a bunch of us jumped in the pool.  Alan was pleased that Gina stopped to visit on her long drive back from Pittsburgh where she had attended a wedding.

Monday:

Day 1 of Alan’s Radiation and Chemo - If there are no interruptions he will finish  on Ginny’s birthday on August 20th.  Maybe we’ll take a few days at the shore afterwards.

While typing this update in the waiting room the nurse came in to warn me and the waiting patients that there would be a delay as they were having a problem “setting the field parameter” on the machine but they were on the phone with technical support.

When Alan came out he reported that they had to reboot the machine and one of the radiation techs was swearing at Microsoft.  I kidded that it was like he was back at work.

OK, so Radiation treatment #1 is done.  Tonight Alan gets his first dose of Chemo.

Off we go back home to wait and see if nausea will be an issue.

Thanks all, we hope the US folks had a great holiday weekend.

God Bless,

Andrew

Alan is home!

A long weekend of laying by the pool is planned.

God Bless,

Andrew

We got home at 4 AM, in bed at 4:20 and the mean nasty alarm went off at 6AM.

We arrived back at the hospital just in time for Alan to be wheeled through the tunnels from the hospital over to the Eye Institute.  After exams etc. the Dr stated he was very pleased that Alan’s limited sight seemed unchanged.  He said he had had a sleepless night worrying that the surgery might have made Alan completely blind.  He stated that the surgery plus the massive steroids was the maximum treatment that Alan could receive and there is nothing else that can be done for his eyesight.  Now we are in “wait and see” mode and the next six months will determine if Alan’s sight improves, worsens, or stays the same.

Alan looks like he was in a prize fight with massively swollen bloody eyelids.  He’s in a bit of pain and in somewhat resigned spirits, but he’s eating well.

Due to the massive steroids (12 mg every 6 hours) that lower his immunity the doctor is worried about complications with the shunt so Alan will remain in the hospital until Thursday or maybe Friday.  He’s also on heavy antibiotics.  He is slated for some further imaging as well.

BOB and Kit visited this afternoon and Gina was headed back over (she was there with us last night for about 4 hours in pre-op) to visit after work.

While at the hospital, Amber called to say that Hobbes (the giant orange tabby) was breathing funny so we left the hospital at about 4PM, got home at 5pm, and I’m sitting in the Vets parking lot typing this while Ginny and Amber are inside with the cat.  On the way here I said in my best Arnold voice - “It’s not a Tuma” (Sorry - another movie reference - Kindergarten Cop)

So the cat has Cardiomyopathy (sp?) and has had two shots and will need diuretic pills for the rest of his life.  That will be a fun task every day.  The entire visit including shots and meds was $55.41 - a far cry from the statement we got today for Alan’s charges just for May 12th when the tumor was removed at Pennsylvania Hospital - $182,790 - Yikes !!!

OK, off to bed before I fall over.

Thank you for your well wishes, thoughts, and prayers.  I was pretty down last night and the replies of sharing, caring, and love were tremendous.  I truley appreciate the perspective adjustment and priority setting from dear colleagues and friends.  Thank you all.

God Bless,

Andrew

12:45 AM - Alan is out of surgery, we are waiting for him to come out of post-op so we can see him.  The surgeon says the procedure itself was successfully performed but he only saw a dribble of fluid when slitting the sheath around the nerve,  where if pressure was the issue, he would have expected to see a spurt.  So he is not very hopeful for the long term outcome.  He said Alan’s right eye was still at least light sensing post-op.  He wonders if some of the tumor cells are the actual issue and if radiation and chemo might help, but again they might simply make it worse as the optic nerves may be hanging on by a very tentative thread.

Basically he said 6 months down the road we will know for sure the longterm outcome for his sight, but for now Alan is quite simply blind and disabled and we need to get on with the business of treating the cancer to save his life.

He’s on massive steroids and antibiotics.  Tomorrow he will have an MRI (and a check by the local neuro-surgeons that it doesn’t screw up the shunt setting) and then the various Doctors will talk about the new schedule for radiation and chemo.

1:30 AM - I’ve got a blanket on Ginny and she attempts to doze amidst the snores of the family of three who share the dingy waiting room with us as we wait to hopefully see Alan before daybreak.  I look back to early May and wonder how a possibility of blindness was not even on anyone’s radar as a concern.  Now it looks like a fact of Alan’s new life.  Could this have been prevented?  Was there something I was supposed to do?  I’m finding this all suddenly so very hard.  I can’t help but grieve at the loss of my doubles and movie-going partner.   I mourn the fact he’ll never go Pro. I mourn the courses he’ll never see, the tournaments he’ll never play in, and the movies he’ll only ever hear.  My heart is breaking as I allow myself to sit here and type these thoughts I couldn’t possibly speak out loud.

But miracles do happen, right?
2:00 AM - Still waiting for Alan to get out of recovery.

2:15 AM - Still waiting.

2:30 AM - Still waiting.

2:35 AM - I was wandering outside the waiting room and saw them wheel Alan down a hallway so I followed them to G201 and went back and got Ginny.  He said his eyes hurt and he doesn’t think he got sick in Recovery.

3:00 AM - OK, off to home for a few hours sleep.  Sleep tight my baby boy.

Thanks as always for your thoughts and prayers,

Andrew

OK, Alan has gone in for the surgery.

Thanks for your prayers.

We’ve been in the pre-op waiting room since 6pm.  A trauma case came in and took the OR  so we are waiting til it frees up.  But at least we actually saw the neuro-surgeon.  He wants to do the “Optic Nerve Fenestration” to both sides as he says it can’t hurt the left eye and could possibly help.  The downside is that the procedure could take away what little sight he has in the right eye, but their feeling is that he will likely lose that anyway, so its worth the risk.  He also wants to put Alan on serious intravenous  steroids so he is now talking about keeping him here for three days.

I will update further, thanks!

OK, as Alan just said “Today has gone from bad to SUCKS”

We were told in Philly that this was an outpatient procedure. But they are now admitting Alan to University Hospital and he will be here at least overnight. No word yet on when the surgery will take place.

Updates to follow . . . Same Alan channel, unknown Alan time. (Showing my age - Baby Boomers will recognize the end-of-episode tagline from the TV Batman.)

Thanks for your continued prayers!

Love,

Andrew

Prayers requested.

We are leaving Philly and headed to Newark. The Philly neuro-opthamologist agrees with Dr. Rosenberg at JFK that time is of the essence to improve Alan’s sight. They want Alan to have a surgical procedure that makes slits in the sheath around the optic nerve to relieve the pressure.

The appropriate surgeon is not available at either Penn or JFK until Wednesday, so Dr. Rosenberg has arranged for a surgeon at the University Medical Center in Newark to do the surgery today. They will do the right eye hoping to improve or at least maintain sight as it is. There could be ancillary improvement to the left eye, however, that is a long shot as the doctor has said that nerve has already atrophied.

Disturbingly, he also categorized the planned procedure for the right eye as “heroic efforts”.

Needless to say, we very much appreciate your thoughts and prayers for the doctors and Alan’s eyesight at this time.

Further updates to follow.

Love,

Andrew