Home now

Not really up for writing now, but checking in to say I’m home and resting.

The Big Day

Tomorrow (Friday) is the biggie.  I went in for another CT scan of the liver today to gauge whether or not there has been any growth at that site.  The initial biopsy indicated the liver to be non-cancerous, but on the recommendation of one of the doctors in L.A., we repeated the test today which is about 4 weeks or so after the last scan.  I didn’t hear back from Dr. Z today, so we’re going with the belief that no news is good news.

Tomorrow will be an all day process.  I have to report to St. Lukes sometime between 10am and 1030am and (wahoo!) get ANOTHER CT scan.  This time to insert a locator wire into the chest tumor.   Dr. Chest will use the wire to minimize the size of the incision he has to make and eliminate the need to play ‘Where’s Waldo’ with the tumor itself. 

After the wire is in place, it’s on to the pre-op area.  Mom will be able to go with me for most of the time (she even has her own pass).  Surgery is set to begin around 1pm and will probably take 3-4 hours.  First, Dr. Chest will go to work (he anticipates this removal will only take a half an hour or so).  Then Dr. ENT will step up to the plate.  He’s got to remove the remainder of the head tumor and then complete both reconstruction of the scalp and cheek.  I know he’s estimated 2 1/2 to 3 hours or so, but let me go on the record as saying….. I sure hope he takes his time.  I don’t have anything else planned for the day so he can take as much time as he needs.

Right now, they’re saying I will be in the hospital for at least one night, with a second night being a possibility.

Mom will have my cell phone so feel free to call for updates or, more importantly, just to let her hear a fresh voice throughout the afternoon.  I’m sure sitting in that waiting room is going to be nerve wracking.  She’ll talk to just about anyone….so keep the calls comin’ !!!!!

No surgery today!

The face margins were clear so no surgery needed today! 

I wanted to mention a neat conversation I had with Dr. ENT while he was working on my head.  I explained the differences of option we received from the doctors in L.A.  He said he could see where they were coming from but truth be told, if he were the patient, he would have made the same decision I did.  That made me feel pretty good.

Although I suppose it would have been a bit awkward for him to tell me that he would not have made the same choice.  Especially at the moment he was carving the ole pumpkin.

I should also say that I’ve had many requests for pictures now that I have no hair.  Most of the requests are coming from friends who, no doubt, want to have a little giggle at my expense.  So here goes…. here’s a picture of me with no hair…..

No Bagels, No Pumpkins

Today went better than I had expected.  We arrived around 7:30am and spent a few minutes going over last minute details and questions.  We were actually walking out of the building at 8:30am, so it went really fast. 

There were the usual events that were comical, probably just to me, but I figured I would share them anyway.

Dr. ENT came in and explained what he expected to happen, injected the anesthetic, and left to go get into scrubs.  Here’s a sidenote.  He decided to numb my cheek area first.  This is the area I was most nervous about.  Previously any work I had done on my cheek was excruciating.  Especially, the anesthestic injection.  Instead of injecting the local straight into my cheek, he chose to inject through the top of my upper gums.  I didn’t feel A THING!  It was awesome. 

So he comes back, dressed all in scrubs, and I had a strange flashback to my Sexy Smurf outfit from the MRI.  He puts drapes over me and a nice cold washcloth over my eyes.  Then he asks, “So did anyone have a more exciting weekend than I did”?  I almost cracked up right there.  First, because no one in the room had any idea what his weekend was like…Did he go all crazy and hang out at a star studded tractor pull event?  Or perhaps it was some insanely intense high stakes pinochle tournament?  Secondly, my face was so numb, if I even tried to speak it would have sounded like “Hmfr Gfs nprg snb”. 

I stayed quiet for most of the rest of the procedure until it came time for him to pack the incision on my face.  He explained that I would smell something unpleasant.  He wasn’t kidding.  It was far worse than last time.  Nasty, nasty, nasty smell.  It reminded me of my first year anatomy class at San Diego State.  After taking the lab portion of the class, I couldn’t eat chicken for months.  It was far too difficult considering how easily I could identify what I was eating.  I began to tell him this story and explained that now it would probably be a very very long time before I tried to toast a bagel.  He made the mistake of laughing at my joke without realizing that when I get the laugh, it does nothing but encourage me to go for another.

Sure enough, he started on my scalp.  I felt him make the incision and start to go to work.

“Hey Doc”.

“Yes”?

“Now you’ve ruined pumpking carving too”.

High Hopes

So tomorrow’s the big day. Let’s just hope they don’t leave me looking like this…….umm, again.

 

7 days

I have this really lame habit of counting down and calculating times.  It goes something like this…

Ugh… 9 hours until I have to go to work  Ok, if I watch TV for another half hour, spend an hour getting ready in the morning, read for a half hour and spend 45 minutes in traffic…… then……….. I can still get 6 hours and 15 minutes of sleep.  Get it?

Or when we were planning our trip to New York City last year I called Nana each day and let her know how much time was left until we departed LAX.  First in weeks, then days, then hours.  She never hung up on me, so I can assume she enjoyed my little game.

Right now, I can tell you Mom will be here in 39 hours.  (I’ve never suggested that anyone else would find it fun to live inside my brain). 

My favorite calculated number right now is knowing that 7 days from today, all of the surgeries will be finished and I will finally be able to relax a bit (I’m guessing the relaxation will come with some pharmaceutical assistance, but it will be relaxation nonetheless).

In the meantime… I’ll fill you in on what I’ve done for the last week.  I finished all of my pre-op tests.  Standard stuff…bloodwork, EKG, and a chest x-ray.  The x-ray was fine, but the chair for the other tests was a bit unnerving.  I walked in and the nurse said, “Go ahead and take a seat in the red chair”.  Um, sorry, but NO.  The thing looked just like an electric chair without the little halo head thingy. 

I

The experience must have shaken me up a little bit because that night I decided to sit somewhere else…..

 

Yep…that’s me…. on a mechanical bull.  What a blast!!!

Enough said.

Isn’t this reason enough to stay in Idaho???

 

ONLY IN IDAHO

Is that your final answer or do you want to phone a friend?

I’ve made the decision to stay in Idaho for surgery and treatment.  The first surgery is scheduled for Monday.  Dr. ENT will be removing the tumor from my scalp and the in-situ from my cheek.  A second surgery is scheduled for Wednesday, if needed.  Friday morning will be the bigger surgery with Dr. Chest doing  the tumor removal from my chest wall and Dr. ENT doing the closing and reconstruction of my scalp and cheek. 

I’ve debated and struggled with the decision for the last week.  I became so emotionally exhausted by the entire process.  Eating anything was painful.  Each time the food reached my stomach I felt like I was being punched.  I think I even lost my sense of humor for a while. 

That being said, I’m just ready to get on with this thing.  I meet with Dr.  Z one last time tomorrow morning to go over a few more details and then we get started. 

I still have a few stories that I haven’t included yet, so I’ll try to include those over the next few days.  Depending on how I feel, I may have Mom write some updates as well. 

Thanks to everyone who has helped over the last month!  All of the cards, emails, phone calls, gifts and meals have been amazing!!!  Some folks have said they were hesitant to call or write… there’s no need to feel that way.  I’ve really appreciated hearing from everyone!  The personal stories have particularly touched me.  There’s so much honesty and intimacy in these stories.  They have been the ultimate in encouragement.   I also want to say thanks to the people who are helping to take care of my family while all of this is going on.  I’ve had wonderful conversations with Grandma about all of this, but there is really no way for me to help Nana understand and I REALLY don’t think it’s helpful for me to even try to explain any of this to her.  With my family spending so much time in Idaho over the next month, I end up in tears each time I think about Nana not having Mom to visit her each day and having no way to understand why no one is there to see her.  Its fun for me to talk with her now… she’s so proud of how the well the Angels are playing.  We spoke earlier of playoff hopes this year and I love hearing the “WOW” from her when I tell her they have a 15.5 game lead. 

For now, I have to go vacuum… Mom is coming on Sunday.

Decision Time

As best I can tell, I have as much information as I can tolerate.  5 days ago I was so darn sure of how things would play out and now I’m just plain emotionally exhausted.  This has really been the first emotional roadblock for me.  I never imagined I would have so many doctors giving me so many different opinions about so many different treatments.  The only aspect of this that all of the doctors seem to agree on is that there is no way to know if I will respond to any of them.  There is no way to know if they will be helpful or not, there is no way to know if they will make me excruciating sick or not.  So many doctors, so few clear cut answers. 

Have the surgeries…don’t have the surgeries.  Have treatment first, don’t have treatment first.  What if I pick a treatment that isn’t effective enough?  What if I pick a treatment that is too toxic for my system?  The one difference I have found in the opinions of the doctors is it seems that the doctors who went to medical school on the east coast all share one opinion, and the doctors who have gone to medical school on the west coast seem to share another.  Dr. H. has done extensive research and says one thing… Dr. K. has also done extensive research and has opposing findings.

I’ve probably changed my mind 47 times.  The possibility of having to leave Idaho for treatment is becoming a probability.  I spent yesterday on the river and thoroughly enjoyed myself.  Normally, I just enjoy the float and the scenery, yesterday I opted to enjoy every ounce of water!!! Each time I saw a little rapid I raced towards it.  Surfing after the little diversion in the I.K. seemed like a blast.  No one from the BRV had tried it before, so what the heck, right?  What a blast… I couldn’t quit grinning.   I flipped on my second try, but what a kick!!!  During the down time, I was able to do a lot of thinking and I’m somewhat sure of what my plan will be. 

I’ve got a few phone calls to make on Monday to get some final questions answered.  The answers to the questions may change my mind again, but I’ll cross that bridge when I get to it.

The wrench

I’ve never been so confused.  I don’t even know where to start.  I went up to the John Wayne Cancer Institute yesterday and met with a couple of doctors.  Doctor-In-Training came in first and was careful not to say too much, just took a bunch of notes and asked some questions.  Then he left to go get Dr. F.  who apparently is the doc DIT was training with. 

Dr. F. took everything we’ve known so far and blew it all wide open.  His recommendations are for IL-2 treatments first and surgery later.  Exactly the OPPOSITE of what has been recommended in Idaho.  This is essentially the “Plan C” I talked about a on 8/1/2008.  He feels the best course of treatment is repeated cycles of inpatient Interleuken therapy.  This would mean being hospitalized for a week at a time.  I could leave the hospital to recover and then just as I’m getting back to normal it should be time to start another cycle.    Then if the tumors respond they will continue with the cycles until the tumors stop shrinking and do surgery at that point.  Who knows how long or how many treatments or cycles this could end up taking. 

I don’t remember too much about the appointment after that.  I’ve changed my flight back to Idaho (the original flight is probably landing right about now..) and we’re meeting with medical oncologists in Santa Monica today to get into more detail about these treatments.