THAT is good news?

I woke up in a bad mood this morning.  A BAD mood.  I was not looking forward to hearing anything the doctor had to say.  All I could seem to focus on was finding some batting cages and swinging for a few hours.  I knew what the results would be based on the fact that Dr. C. had made the decision to biopsy my liver after seeing the CT scan on Tuesday.  I wanted nothing to do with breakfast and really wasn’t fond of my coffee at all.  I felt so defeated.  Every time I’ve been to the doctor I seemed to be getting news that was worse than even the doctors had anticipated previously and, frankly, I was tired of being in a happy world about it. 

We got to the hospital and showed my sister around the waiting area, the library, the puzzles and the juice bar.  I decided not to have her come into the exam room with me.  Instead of hearing things from the doctor, it was probably best that I try to rephrase some things and explain them to her myself.  She cried a bit, I know she’s scared, and then settled in to use the computer and wait for us to come out. 

The nurse walked us back and got the room ready for the doctor to come in.  She left the liver CT and the full body PET scan up on the computer monitor.  If you look closely you can see the colorful spots on the PET scan.  You also can’t help but admire the largeness of my brain. 

 

Wow, that's a BIG brain!

 

 

I called mom and got her on speaker phone to listen in.  Dr. Z. walked in and asked how I was doing.

“YOU tell me.” I settled in to hear the news.  I’ve heard that if you relax when someone punches you, it doesn’t hurt as bad. 

“The spot on your chest wall is another melanoma site.”  I nodded.  I knew it.  “The spot on your liver is not.”  I stared at him.  Did he really just say that my liver was fine?  I was sure I had misunderstood.  Technically, this means the cancer is classified as metastatic, but the PET scan clearly showed no lymph node involvement.  Once again this means:

HEATHER = ABNORMAL

Dr. Z. has initiated contact with two other facilities (The John Wayne Cancer Center in Santa Monica, and the second hospital is in Boston, I believe Massachusetts General).  He says he’s waiting to hear back from each of these places to get their opinion on the situation.  Having cancerous sites as far apart as my head and chest without lymph node involvement is highly unusual and definitely not textbook melanoma.  He’s also said that he will present at the hospital’s tumor board on Tuesday to see what insight can be gained locally.  He explained that the doctors in Santa Monica may recommend I get treatment there, or they could tell him that I will be adequately served by treatment here.  There are also a couple of other choices now that we know specifically where the locations are and, equally as important, we know that all three of these sites CAN be removed surgically.  This last factor is HUGE in deciding on a course of treatment.

So, instead of being upset about the additional melanoma site, I quickly began to understand that I now have additional options that weren’t as clear last week. 

Here they are:

PLAN A

This plan remains the same.  Stay here for the entire treatment.  Surgeries, then 30 days of IV Interferon, the 11 months of subcutaneous shots.

PLAN B

This plan is not as likely anymore.  This is 5 day inpatient care, most likely in an ICU with exceptionally high doses of chemo, coupled with a year of chemo.  This treatment also requires leaving the tumors inside the body so as to watch how they respond to the treatment.  This is more for someone whose tumors cannot be removed surgically.  It’s absurd for me to voluntarily leave them in when the doctors are extremely confident they can be removed in their entirety.  This option is pretty much off the table.

PLAN C

Return to So Cal to have all treatment completed in Santa Monica. 

PLAN D

Return to So Cal for the beginning stages of treatment including surgeries and initial 30 day treatment cycle.  Returning home for 11 months of follow up treatment.  This is do-able in my mind and equivalent to Plan A if I get to decide. 

I should be able to make some final decisions on Tuesday.  I have an appointment with the ENT at 10am and I should hear from Dr. Z by the end of that day. 

Overall, I finally feel like the good guys won one today.  (This is a good time to note that the Angels have crushed the Yankees two nights in a row).  Instead of feeling like I’ve hit another nasty setback, today returned some hope.  Beck and I are planning on spending every second possible on the river this weekend.  It’s the best way I know to relax for 6-7 hours at a time. 

By the way, did you notice how big my brain is?

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…..

Getting ready for 7.21.2008-7.27.2008

Lots of doctors appointments set up for this coming week !!

Monday – meet the Head and Neck surgeon.  I’m not too sure what this will entail.  He doesn’t have a ton of information to go on.  I would think he would need to have the imaging results in order to make some determinations.  The nurse said this was primarily going to be a “meet and greet” with the doc.  The only thing that is kinda freaking me out about this is the guy was supposed to be on vacation this week and now he’s coming in to meet with me.  That seems odd.  Especially without test results.  We’ll see.

Tuesday- tests, test, and more tests.  I’ve got to be there in the afternoon and have to deprive myself of sugar and the sacred elixir called caffeine for 6 hours prior to going.  No caffeine for six hours???? The only time I ever do that is when I’m sleeping.  UGH.  Blood work, MRI’s, and PET scans is what they’ve told me have been ordered.  Here’s a pretty cool link explaining what PET scans are http://www.radiologyinfo.org/en/info.cfm?pg=PET&bhcp=1

Wednesday- so far looks like a day off.  Mom flys in around 10pm after flying all day.  It sucks for her, she’ll be on a business trip and there are no direct flights in Boise from NYC so that means she has to fly from JFK to LAX and then come up here.  Yuck.

Thursday- return to the dermatologist, Dr. B., removal of current stitches both in my head and on my face.  Probably not a lot of information will be exchanged between myself and him, but I’m sure Mom will have a boatload of questions.  I’m curious to see if she notices the similarities between him and my doctor in San Diego.  It’s really eerie.

Friday- first appointment with the oncologist.  This will be the big day.  Most, if not all, of the tests should have results and hopefully, we will be able to find out the extent of this thing.

On a lighter note, the youtube page http://www.youtube.com/watch?v=g1FamHrhSwM now has over 1,200 hits from people looking at my scalp!!!