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.

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?

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!

 

IMPORTANT ANNOUNCEMENT

Well, maybe not earth-shatteringly important for everyone, but I thought I’d take the opportunity to note the Angels have the best record in baseball right now and are 10 games ahead of the nearest team in their division. 

It is, after all, MY journal.  Nana thinks this is great news.

Nana diggin' the Angels locker room