Happy New Year Everybody

Hi everybody, it’s Heather.  I’m doing pretty well.  I’ve been out of the hospital for a little over a week now and I’m almost back to my old self (with a few exceptions, I’ll get into in a minute).

Before I go any further, though, let me just say that my family has ROCKED during this whole process.  Mom and Mel spent all 6 days in the hospital with me… camped out in my room.  Literally camped out.  They had everything but a tent set up.  I don’t remember much of the hospitalization (they kept me pretty incoherent most of the time), but I do remember constant coaxings from Mom and Mel for me to “take a sip” or “try to drink” at all times of the day and night. 

Here’s a pic of the set up for Mom and Mel.  Mel got the air mattress on the floor and Mom got the rock-hard window seat.

 

They really roughed it to take care of me.  Dad has been in charge of the kitties.  Lefty Lucy and Scioscia have adapted better than I would have thought to staying at Grandpa’s and he seems to be taking to them quite well.  Dad calls several times each day to update me on how they’re doing.  I think he’s actually starting to enjoy having them there, but he’ll probably never admit it.   I was unsure about how well they would do there, but I’ve been so touched by how hard Dad has tried to make them comfortable, now I can’t imagine them being anywhere else.

Now we get to Becka… Becka is my buddy.  She’s always been my Buddy and she would do anything for me.  She’s been staying with Mom and I and she anticipates anything I might need.  She’s been incredible.  She checks on me constantly, wants to make me comfortable, reminds me to take my meds, and is right by my side when I’m getting sick.  She’s been a rock.

These treatments are pretty hard on me.  Some of the side effects have been pretty brutal in comparison to the Interferon treatments.  I didn’t take in any food for 8 or 9 days and even then, the only thing I ate for 2 or 3 days was about 3 teaspoons of white rice.  I struggled to even keep liquids down.  This is starting to change and I got up this morning feeling like I REALLY wanted a bagel!  The other real bummer of a side effect has been the neuropathy that has developed in my forearms.  It started as pins and needles and moved into extreme muscle aches.  My left arm seems to have resolved, but I still have difficult straightening my right arm.  My hope is that this all resolves before I go back into the hospital and that it doesn’t have a cumulative effect with the next round.

Other than that, my strength is returning and I’ve been out of the house for a while each day.  I can now shower by myself, which is very exciting.  Having to ask for such basic help was quite humbling, but never an issue for anyone who helped.

I’ll try to check back in a few days, if not, you’ll hear from Mel or Mom again, I’m sure.  For everyone who has called or stopped by, thanks so much!  I’ve been so moved by everyone and I love the contact.  It lifts my spirits each time the phone rings! 

I try to leave most posts on a positive note…  want to see the best part about chemotherapy?  I have a picture….

 

Tests, tests and more tests

Today was kind of a trip.  I went in for all of my pre-treatment scans.  An ultrasound of the liver showed the tumors to be somewhat small in size and not blocking any of my bile ducts.  I’m assuming that “small” and “not blocking” are the operative words.  Then I went for a Muga Scan (http://en.wikipedia.org/wiki/MUGA_scan) that entailed taking a small amount of my own blood, infusing it with radioactive material (no flux capacitor this time) and then re-infused the blood into my system.  The goal was to check heart function and timing.  It was pretty interesting. 

Lunch today came from Philippe’s restaurant in L.A. (http://www.philippes.com/).  The place is amazing!!! It’s been in business over 100 years and has amazing french dip sandwiches.  Did I mention we ate there yesterday, too?

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…

It’s always about baseball in Grandma’s eyes.

This has been a pretty remarkable week.  So much has happened.  I received a phone call from a pharmaceutical company somewhere in Kansas telling me that I had been approved for their “Commitment to Care” program.  What that means in a nutshell is that they have agreed to cover my prescription costs for 12 months.  That’s no small gesture!  The interferon shots that I started yesterday will run approximately $85,000.  This is truly an answer to prayer and nothing short of a miracle.  I also found out that I was approved for Medicaid, so that should help with the costs of the surgeries.

I have to comment on the election last week.  Not a political comment, but a funny anecdote.  My first response when the election was called was that I wanted to speak with my Grandmother to see what her perspective was.  I asked her if she ever thought she would she would ever see a black President.  She responded by telling me that she never knew it was something she could think about.  I thought that was a wonderfully insightful response.  Then she continued by asking me, “Did you see Reggie Jackson in the audience.  He was crying.” 

“Um, Grandma….. I think that was Jesse Jackson”.

“Oh… well Opal was crying, too”.

“Yeah, um, Grandma…. her name is Oprah“.

YESTERDAY

I started the next phase of treatment yesterday.  It was kicked off by having some bloodwork done.  Evidently, even though most of my bloodwork came back fine last week, for some reason my bilirubin counts continued to climb slightly, so they needed to recheck that.  The injection was a piece of cake: a little swab, a little pinch, and a little stick.  All done. 

The effects came on much quicker than I had anticipated.  I had actually sat down to update the journal when around 630pm I started shaking.  No little quivers, no tiny chills…. just went right into the shakes.  I laid on the recliner for about half an hour trying just to control my breathing to see if I could calm things down.  No luck.  I had just done laundry so I grabbed my sheets and went to put them on the bed.  I got two pillowcases done and realized that it wasn’t happening.  I grabbed on of my little blue bags just in case and fell into bed.  After another 20 minutes or so, I was still shaking and knew I needed something.  Getting out of bed was not an option, I knew this.   I started to get a little scared because I was by myself for the first time.  During all of my other treatments someone had been with me 24 hours a day.  I called a friend from school and asked her to come over for a while, she agreed without hesitation. 

I’m really not sure what time it was when things settled down.  Sandy was still here when what little fever I had broke, it must have been around 930pm or 10pm, I’m guessing.  I woke up once more around 1am and then slept through the night until 930 this morning. 

The reaction last night was similar to when I first started treatment at the end of September.  The only difference I remember was last time there was more fever and less shakes.  I’m hoping it all subsides after the first few treatments.

Writer’s block?

Not exactly… I’ve just really tried to put a sincere effort into resting this week.  I’m happy to report that the surgeries and the recovery have gone SO much better than I anticipated.  I’ve got some notes written from the last week and I plan on reporting on all of the “Hospital Hijinx” I experienced.  From the Arrival/Departure boards to the diabetic nurse to ‘TAYO’.  I’ll explain each of these and more in the coming days.  For now, I’ll just give the update.

ALL KNOWN CANCER IS GONE.  That’s the bottom line.  All margins have come back clean and the surgeons are happy.  Tuesday I was a little disappointed when I went to have the drain in my side removed.  Apparently, the nurse(s) forgot to show us how to operate it correctly, so it needed to stay in place a couple of extra days.  On the other hand, the staples on my scalp came out at least 4 days earlier than I thought they were to come out, so that was a total BONUS!  Yesterday, the drain, the stiches, and the staples came out! I am completely AMAZED at how much healing has already occurred. 

I’m heading back in for another biopsy on Wednesday.  There is still some debate over the spot on my liver so I’ve asked that the biopsy be repeated.  Until now, I’ve refused to make any surgical and/or treatment decsions regarding the liver because the tests have been less than definitive.  Hopefully, this round will be the winner.

Class started up again last night and what a thrill it was to be there! 

I’ve got plenty of pictures to share, as well.  I’ll start getting those up thoughout this week.  Tomorrow is the changing of the guard: Dad flies in around 4:30pm and Mom heads back to California just a little later on.  One airport trip, one swap.

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. 

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?

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!

 

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!!!