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.    

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 !!!

Think happy thoughts….

I refuse not to continue to have fun.  For the last couple of months I’ve been working with the Boise River Volunteers.  In the beginning I was just having fun cleaning up the river and hopefully helping a few folks, now it’s become one of my favorite ways to relax and enjoy what I think is one of the best parts of this city.  It’s become completely therapeutic (that is… as long as I continue my non boat-flipping streak). 

 

Check out my UV rated SPF outfit !!!

 

 

Since I didn’t have any doctor’s appointments over the weekend, I thought I’d take some time to write about the organization. 

The BRV spends countless hours on the river each week during the summer.  Each Friday, Saturday, and Sunday a group of volunteers will meet at Ann Morrison Park, carpool up to Barber Park and the day begins.  We take hundreds of pounds of trash off the river each weekend.  Everything from simple cans and bottles to bicycles, picnic tables and crazy items no one would ever imagine.  Along with the trash removal, we’re also performing countless rescues, patching and pumping boats, and taking care of some of the dangerous landscaping. 

It’s always a full day (last night we didn’t get to our dinner destination until after 8pm) and always a good time.  I wanted to spend as much time as possible this weekend thinking about anything other than cancer and working with the BRV did the trick.  Here are a couple of links to the BRV website…..

http://www.uplandidaho.com/bio_cons/volunteers.wmv

 www.riverhelpers.com

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. 

Welcome to Hidaho!

If you ask Grandma where I live now, she’ll tell you I live in the great state of Hidaho.  You know where Hidaho is, right?  It’s just north of Hutah and just east of Horegon.

I’m glad I got to visit OC over the weekend.  On Friday night, when I visited Nana, she said all she wanted was to have all three of her granddaughters there sharing a meal with her.  So it was fantastic when on Sunday my sisters and I were able to enjoy that time with her.  (Of course this warranted a second trip to In-n-Out).  It always blows me away that at 93 she is able to wolf down an entire burger (with grilled onions,please), fries, and drink! 

Dad picked up my youngest sister and I this morning at 5am.  I used to be at work most days before 5 am, but back then 5 am actually came at 5am.  I’m convinced that 5am came at about 3am today.  We settled in for our flight back and the toddler behind me settled in to discover the inner workings of the tray table on the back of my seat.  Apparently, children learn best by slamming these tray tables into the chair they are mounted on.  We’ve studied child development some over the last couple of semesters, but I must have skipped that chapter. 

Tomorrow will be another starvation Tuesday.  No food after 6am.  CT scan of the liver scheduled for about noon-ish.  The chest wall biopsy is scheduled for 245pm.  My understanding is they will check the results of the liver scan and if they feel it’s necessary, biopsy that as well.  One of the nurses called today to discuss the procedure and I asked about the anesthetic.  She called it “cognitive sedation”.  She said, “this way if we need to wake you to give you instructions you’ll be awake enough, other than that you can sleep through it.  It’s actually kind of nice.” 

It’s actually kind of nice.  Ok, sure, if you say so.

There’s always an upside….

to visiting Orange County.