Hospital Hi-jinx

Driving to the hospital on the morning of the surgeries, I was excited to get a wonderful treat (aside from Mom GPSing her way all the way to the hospital on the ONE street we had to drive to get there).  My cell phone rang and on the display was an area code I’d never seen before.  I answered the phone and received the most awesome suprise… the call was coming from PFC Andrew Ostgaard.  In my mind Andrew is a three year old running around with a book in each hand.  In reality, he’s now a Marine recently stationed in Iraq.  VERY recently.  Like two weeks or so recently. 

“I’m glad I caught you before you went in to surgery.”  I was speechless and in tears.

Ok.  Wow.  Just plain wow.  24 hours later I received another call.  “Just wanted to check and see how you were doing.”  I was totally blown away.  Thanks, Andy….  those calls meant the world to me.

Just a little change of plans for this week.  Dr. Flux Capacitor is off until Thursday.  He’s the radiologist who will be performing the CT Liver biopsy and if necessary the Radio Frequency Ablation.  My understanding is that the RFA uses microwaves to kill off any undesirable tissue.  Microwaves, huh?  I’m definitely bringing some popcorn.

PFC ANDREW HAROLD OSTGAARD

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.

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.    

Schedule

I think we have a schedule put together. 

Monday, Aug. 25^th. 7:30am. Dr. ENT will remove the rest of the tumor on my scalp as well as the spot on face.  Both sites will need to remain open until pathology results are received indicating margins are clear. 

Wednesday, Aug. 27^th. 7.30am.  Second procedure scheduled just in case there is a need for additional removal.  If the pathology comes back and there is no reason for this then it will be skipped.

Friday, Aug. 29^th, 1.pm.  Surgery scheduled for removal of chest tumor.  Also at this time both head and face surgical sites will be closed, as well as reconstruction of these areas.

Mom will fly to Idaho on Sunday, Aug.24^th and she will be staying until Sept. 6.  Dad flies in on the 6^th and will be staying through the 13^th.  Hopefully, this will be enough time for all sites to heal and have suture removals, etc. 

I’ve been having an interesting weekend here in California.  I had a long talk with Grandma Thursday evening about what has been going on.  This is the first time I’ve really told her anything.  She seemed to take it well.  I’ll write more tomorrow, but I wanted to get at least something posted today. 

FANTASTIC NEWS TODAY !!!

Dr. Z called this afternoon to tell me the doctors at Tumor Board decided unanimously for treatment here in town!  He said he also spoke with some of the doctors he worked with in Boston and they also agreed that with complete surgical excision of the three spots, there was no reason for me to have to travel for treatment.  Definitely this has been the best news so far.  I finally feel like we have a treatment plan in place. 

I also met with the ENT surgeon (yes, this is the same surgeon I had initially thought I would not use)… my opinion has since changed based largely on the fact that ALL of the other doctors I have spoken with have sung the praises of Doctor ENT.  He explained much of how he plans to proceed…where the incisions will be, how large they will be, and what he expects the process to look like.  His confidence in the successful resection of all sites made me feel far more comfortable than I did last time.  He did say that he would operate on both my head and face in the same surgery.  In fact, all three sites will be taken care of in the same surgery. 

In the meantime, I’m going to head back to California for a week or so.  While I’m there, I will probably take advantage of the consultation at the John Wayne Cancer Center in Santa Monica.  I’d be a fool not to use this resource and I’d probably regret not getting the second opinion there. 

Tomorrow should be the day we are able to get everything scheduled.  The first surgery will be excision of all sites with my head and face incisions being left open to allow for pathology results. (Melanomas don’t respond to the common MOHS procedure that would allow for instantaneous margin results…it takes a couple of days for the results with melanoma).  After 3-4 days we should know whether more tissue needs or be removed or if Dr. ENT will be able to close the sites.  4 weeks after the closure of the incisions the 30 day IV Interferon injections will start.  Following that I will then be instructed on giving myself injections and will do that MWF for the subsequent 48 weeks. 

So this is great news!  Surgery and chemo fun in the comfort of my own environment… I’ll update again as soon as the schedule is set !!!

You’ve lost that warm fuzzy feeling…

            Yesterday was the big testing day.  No food, no caffeine, no sugar.  Just water.  I got to the hospital and was told the PET scan was going to be first on the docket.  Much to the hospital’s credit I waited all of about 3 or 4 minutes.  The PET tech came to get me.  He reminded me of (do whatever you wish with this description) a surfer from Arkansas.  Totally laid back with lots of twang.  We started on the walk to the machine, we must have covered 70% of the hospital’s campus then outside, downstairs, into another elevator to a portable trailer near the breast cancer imaging center.  It was quite the hike. 

            He leads me into a small room with two reclining chairs.  He explains that he’s going to inject something and then we have to wait for it to be absorbed before they can complete the test. “Ok.”  I thought.  I sat back and he started tying off my left arm.  He inserted a port that had two (maybe three, I can’t be sure) docks for needles.  One needle went in and then the fun started.  He reached for this stainless steel canister that was frosted on the outside and huge!  Marty McFly eat your heart out, I think I just found part of the flux capacitor!  I have kicked myself repeatedly for not getting a picture of this thing.  Surfer Dude from Arkansas then gave me the best testing instructions I have ever received: “Lay back and take a nap…I’ll be back in 45 minutes”.  RIGHT ON!!! I can do that! 

            As promised SDA returned and for the next hour and a half I alternately stuck my head and feet into this machine that had a big donut hole opening.  It wasn’t too bad at all.  I think I even slept most of the time. 

 

 

PET scanner with Surfer Dude from Arkansas

 

 

 

 

            On to the blood work, this got interesting.  There was some confusion about the port being left in my arm.  No one was entirely sure whether or not it was supposed to be there.  The phlebotomist even looked at me at one point and asked, “Can I get blood OUT of that?”.  I immediately offered my other arm to her and told her just to use the other one.  At one point, I looked at the friend who was with me and said, “Yeah, that warm fuzzy feeling you’re supposed to get…I don’t have it”.  As it turns out SDA left the port in for the MRI gang to use later in the day. 

            We finished up with the blood work around 3:30pm and the MRI was scheduled for 3:45pm.  Just enough time for me to INHALE a sandwich and some M&M’s.  The nurse came out and explained that I needed to change into scrubs for the MRI.  I so totally looked like Sexy Smurf.  The MRI itself kind of sucked.  I had to lay down on this table, she taped my head down (even after I tried to argue that I had been able to stay completely still for the PET scan), then put this football helmet thing over my entire head.  It was obnoxiously loud even with ear plugs.  Luckily, there was a mirror attached to the football helmet so I was able to see not only the window, but also a clock so I had a pretty good idea of when it was going to be done.

            We should have results tomorrow or Friday at the latest.  One bummer note, today Mom’s plane was delayed at JFK for over 4 hours.  She was pretty miserable because they were actually on the runway the entire time.  This meant she missed her connecting flight and won’t get here until tomorrow.  Fortunately I was able to switch my appointment with Dr. B. tomorrow. 

            ‘Til next time…..

The makings of a plan

Dr. B (dermatologist) just called this evening.  Lots of information.  The biopsy on the spot on my face reported as a melanoma-in-situ.  He did receive a copy of the biopsy results from 2 years ago confirming that it was previously non-cancerous.  His hope was that he could prove the spot on my face was the primary source of the cancer, but it’s very rare for an in-situ to cause the type of melanoma found in my head.  They will be removing the spot on my face entirely (I forgot to ask when this will be done but my assumption is they will do it at the same time they do the tumor removal).  They’ll do some further testing on it after it’s removed. 

 

He also somewhat laid out the timeline for the next couple of weeks.  The next new doctor I will see will be the oncologist (Dr. Z) on the 25th.  The head and neck surgeon/ ENT (Dr. R) is out of town next week and I will meet with him when he returns.  Until then I will be sent to get the other tests: liver, lungs, brain, and bone. If ALL of these come back negative then they will send me for the sentinel lymph node biopsy (Yes, Mom, he was thoroughly impressed you knew what this was).  The goal right now is to determine the source. 

 

I have to try to make contact with the first doctor who performed the first biopsy years ago in San Diego.  For some reason, the records that were sent didn’t include the 1st biopsy. 

 

I did ask about travelling next month and he said not to cancel anything just yet.  I’ll pop in to get the stitches out on Wednesday.

I’m definitely concerned…

These were the words from a doctor I met yesterday.  This doctor would begin to tell me that the lump on my head that I have come to know and love as a friendly neighborhood cyst, in fact, probably wasn’t. 

I’ve told people over and over again that I have a firm policy against worrying unless I have a specific reason to worry.  It drives me nuts when people freak out as their doctor gives them a list of all the possibilities.  My perspective has always been that unless the doctor tells me that something is absolutely wrong then the possibility exists that it’s really nothing bad.  Assuming either way isn’t helpful.

So the doctor spent what seemed like 30 minutes pulling and cutting and tugging inside my head yesterday.  Luckily, I didnt’ feel a thing.  They did an excellent job of numbing me up.  They (by ‘they’ I mean the doctor and the nurse) seemed to be having some difficulty stopping the bleeding.  After about 6 or 7 minutes of searching for where the blood was coming from and several zaps of the cauterizing instrument, the bleeding was controlled with some extra stitches and he was ready to close.  Eight more stitches on top of the scalp and I was able to sit up for the first time in about 90 minutes. 

I glanced over to the tray the doc had been working from and saw what looked like part of one of my old Lincoln Log toys.  “Is that it?”, I thought.  It was twice the size of the lump I felt on my head.  I would soon come to find out that he hadn’t even removed half of what he saw.  I asked about this and he explained that he didn’t feel comfortable removing any more of it in an office setting.  Anything more would require surgery.  Like in an operating room. 

The doc went on to explain it would take 7-10 days to get the results from the lab and added that he liked the lab here in town as they were very quick and thorough.  In the meantime keep the wound dry and come back next week to get the stitches out. 

The nurse dressed the incision and I set up the follow-up appointment. 

My phone rang a few minutes ago.  It was the nurse.  The doctor has my results and wants me back in his office at 4pm today.  When I hesistated she said they could possibly wait until first thing tomorrow morning but the doc needs to see me as soon as possible ”to discuss the options”.  This is never good news.  So much for having 7 – 10 days.

 

How I found out my cyst had ruptured…

NOT FOR THE SQUEAMISH…

(but pretty cool, now that I think about it)

http://www.youtube.com/watch?v=g1FamHrhSwM