Update 12/15/2008

A week ago I went for additional scans: a full body CT scan as well as an MRI of my head.  The good news is the head/brain MRI came back entirely clear!!!  Unfortunately, the CT scan showed not only recurrance of some of the previous tumor sites, but additional growth and metastasis. 

So we have wasted no time getting the ball rolling on the start of a new treatment plan.  Last Wednesday, my sister Melissa flew up to Boise and we packed up what I would need for an extended trip to L.A. (including my two kitties Lefty Lucy, and Scioscia) and we quickly headed south in my car. 

Before we could leave Boise, however, my wonderful cohort friends came over for an evening of hilarity and laughter.  I was really glad to see them because I so wanted them to know that regardless of this year’s challenges, it has still been the best year of my life.  To which they quickly informed me that I needed to get out more!  Ever the smart asses…

Mel and I took several days to drive, stopping to spend the night in Provo and Las Vegas.  Ironically, a friend of mine (Dr. Popcorn Chicken) was at a medical conference in Vegas at the time, so Mel and I got to spend an evening of hijinx with him.   He wanted tattoos…. I was strong enough to decline!

I’m back at Mom’s house now and we’ve already had our first dose of In N Out burger.  We have an appointment with Dr. H at the John Wayne Cancer Institute tomorrow at 11am.  I’m eager to hear what he has to say…

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?

More biopsies

            Yesterday was another fun filled day of needles and cameras.  I’m running out of analogies to use to explain things to Rebecca.  Last week when I was scheduled for the MRI and PET scan, Beck had some questions about what the tests involved.  I knew instantly that she wasn’t scared of the information but she was terrified by the things she was wondering about.  I used her recent trip to Idaho over the 4^th of July as a springboard event to help her understand.  Over the week she was here we used several different types of cameras.  We used a digital camera for taking pictures on dry land, we used an underwater camera at the water park and while in the river, and then I reminded her of the old klunker of a Polaroid that Dad uses.  Each camera has a different way of taking pictures, each camera can produce different types of pictures and each camera has a specific purpose (the jury is still out on the Polaroid there).  I told her the PET scan would take one type of picture and the MRI would take another type of picture, etc. etc.  (I told her if I ever saw a doctor carrying a Polaroid that we needed to call the police).  This seemed to make some sense to her and ease her fears. 

            I got to the hospital yesterday morning ready to get through this round of imaging.  The schedule for the day included a CT scan of my liver and a biopsy of my chest wall.  If the CT scan indicated that the spot on my liver was still suspicious they would biopsy that spot, as well. 

            I got checked in through the outpatient clinic and sat down for a minute or two.  Then a lady holding a chart waved to me said, “Ok”.

 I looked at her and said, “Who? Me?”

“Yep.  Let’s go over here”.  She sat down at a desk and started typing away.  “So you’re back again?”

I had no idea who this woman was.  Seriously?  How many hundreds of people she must have seen all week, and she remembers me?  “Ok, you’re all checked in.  Just go to the elevator, head down one floor, turn to your right, step to your left, put your right foot in, and you’ll be in the imaging department.  Got it?”

 

Um, yeah, sure.   

            I found my way to the right place, grabbed a crossword puzzle and waited to be called.  When the nurse called me back into my room for the day, she tried to be somewhat comforting, letting me know that I was getting the designer version of a hospital gown.  I looked for the DKNY label, but no luck.  She explained the process and I told her that I needed to be cognizant of any fun photo ops.  She looked at me like I was crazy until I explained the journal and the missed opportunity with the pseudo flux capacitor last week.  Just then the radiologist, Dr. C. (not to be confused with Mr. C of Happy Days fame) walked in and informed us that he had an operational flux capacitor in car and was quite careful to stay within the precautionary speed limit.  I instantly knew he was a good guy.

            A few moments later my hero walked in.  No….not Huey Lewis.  It was the radiology tech and he became my momentary hero because he handed me a fantastic bottle of water.  Keep in mind it’s about 1230pm now and I haven’t put anything in my system since about 10pm last night.  I needed to have a full bladder for the CT scan.  RIGHT ON!!! Gulp, gulp, gulp….aaaahhhhh. 

            All prepped and ready we headed to the imaging room.  Huey explained the process of injecting the contrast for the scan and the sensations I would experience.  I have to say his descriptions were dead-on.  Holy cow.  That’s all I have to say about that.  Before I knew it Dr. C was standing over me describing how they were going to do both biopsies here and now.  He had read the scan and felt it was necessary to take a piece of the spot on the liver in addition to the spot on the chest wall.  I felt my heart jump into my throat.  I was sure they wouldn’t have to.  In a matter of seconds, Huey was standing beside me marking me up with a pen and here came the drapes and nasal cannula and LOTS of people.  I couldn’t see the nurse who had promised me the “you won’t feel a thing” drugs so I asked for her.  I never did actually see her there but I think I heard her voice, and really didn’t feel too much (with one exception) so I’m going to give her credit for being there.

            After it was all said and done and I was back in my room, I talked with the nurse about the one time I felt some strange pinching.  She said she learned that I was a “sedation lightweight” (I still haven’t decided if this is an insult or a compliment) and at one point my lung relaxed onto the tube being used for the biopsy.  I started feeling a little sick to my stomach and then immediately found out why I wasn’t encouraged to drink the water earlier. 

            As I was getting ready to leave, I did get to have a little fun.  The nurse started to tell my friend about my care instructions for the next 24 hours.  She explained that one of the drugs I was given would probably make me forget things so don’t be surprised if things need to be repeated to me.  “Yeah”, I said, “I just hope they can get this biopsy done and over with soon”.  The look on her face was priceless. 

Angels 6, Orioles 5

The good news is the Angels beat the Orioles yesterday 6-5.  With few exceptions, yesterday was somewhat lacking in the “good news” department.  I’m just going to lay it all out there…

The scans from last week indicated some additional areas of concern.  First, a spot inside my chest wall that appears to be another melanoma site.  Secondly, the scan also revealed a suspicious spot on my liver.

The spot in my chest appears to be just external to the intercostal muscles and the subcutaneous fat.  While I would, of course, prefer this wasn’t there at all, this isn’t the worst location in my chest cavity.  Being external to the intercostal muscles means that it’s not inside my lungs which would present numerous additional challenges.  They are not 100% sure if this is another melanoma site.  Whether or not it is determined to be another melanoma will play a huge part in treatment plans.  A biopsy of the area will be done on Tuesday.  The liver lesion most likely is not an area of concern.  The doc has ordered an additional CT scan scheduled for Tuesday to be sure.  The results from both tests should be available next Friday which is when I meet with Dr. Z again.

How this plays out: PLAN A vs. PLAN B.

PLAN A

This is the best case scenario.  If the chest biopsy comes back negative the next move will be to schedule removal of the rest of the tumor in my scalp and to remove the spot on my face.  This will most likely be done in two different surgeries within the next couple of weeks.  Following that will be 12 months of daily chemotherapy injections.  Right now my understanding of the way this would works would be an initial 30 day regimen of I.V. treatments followed by intramuscular shots for the remainder.  He didn’t paint a fabulous picture of how people respond to this treatment, but EVERYONE responds differently.  This is definitely do-able from St. Lukes. 

PLAN B

If the biopsy results come back positive, because of the physical distance between the lesions the diagnosis will then be considered metastatic and the treatment plan is altered dramatically.  At that point a referral would be made to a “major medical facility” in a larger city.  Part of the treatment would require inpatient care and definitely isn’t my choice for how I’d like to spend the next year. 

CURRENTLY

I flew back to California with Mom yesterday afternoon.  I’ll be here for the weekend, returning home and bringing my youngest sister with me on Monday. 

Dad, Mom, and I sat down for a couple of hours last night making sure we all have similar understandings.  This has probably been the toughest part for me.  I’m having a hard time looking either of them in the eyes because they both seem so full of fear.  I’m really not fearful.  I’ve been saying for the last few weeks that I’ve had a huge sense of “God’s got this”.  I can’t change much of the situation so I’ve really got the easy part, I just have to keep moving through it.  The feelings I’m fighting right now are mostly feelings of anger.  Anger at the possibility that I may not be able to follow through with what I’ve started this year.  I’ve spent 10 years hoping to move back to the area and I’m starting to get really frustrated with the idea of not being able to finish school.  Obviously, I don’t know what next week will bring, but this is the first time I’ve had feelings I couldn’t immediately work through. 

I’ll spend the rest of this weekend hanging out in Orange County.  Lots of time with both of my grandmothers (it was awesome to walk into Nana’s room yesterday and say “Hi Nana” and have her respond with, “Heather?”. Having her recognize my voice without hesitating was pretty cool).  I’ll head over to see Grandma later today.  I’ll probably spend some time at the batting cages and mostly likely will head to the beach for a little while. 

Oh yeah, and Angel games are televised here.  I’m DEFINITELY taking advantage of that!