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?

More info

We met with Dr. H and his team today at the Cancer Institute.  Apparently, his read of the scans is different than what the doctors in Boise saw.  His feeling is that my lungs are disease free.  This is good news.  However, he does feel that there is lymph involvement in my back.  That being said the course of treatment will be what is known as IL-2 (pronounced “aisle two”).  I’ll be admitted to the hospital this coming Friday for 5 days of consecutive treatment.  On the 6th day, I’ll return to the clinic for a 3 hour hydration session and then I’ll spend two weeks recovering at home.  We’ll go through 2 cycles of this and then rerun the scans to see if we have made any progress.

From what I understand, the hospitalization is pretty intensive so I’m asking for no visitors.  Especially during this first round.  Let’s see how it works out and what I can expect for side effects and then I’ll know whether or not visitors are cool.   Mom and Mel will be staying with me at the hospital.  Dad and Becka will be making the commute. 

I’ll post more as I get more info.  Tomorrow is a full day back at the clinic getting lab work done in preparation for admittance.  Feel free to ask any questions….

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.

Update from the Chemo Suite

Lots of information to update!

Probably the MOST important information to pass along is news of the Angels hitting the 100 victory mark for the regular season.  Celebration worthy, no doubt.  The playoffs start on Wednesday.

Ok, now on to the other “stuff”.

Chemotherapy started yesterday.  The first step was a lab draw and everything looked good (Mel and I even spent some time checking the lab results on the computer while waiting for the doctors appointment).  Dr. Z was out of the office so we met with a nurse practitioner whose name I can’t recall right now.  (Mel said they told me memory loss was a side effect of the chemo…. I told her I don’t remember them saying that). The nurse proved to be just as awesome as everyone else we’ve dealt with throughout this process.  She was extremely familiar with interferon and even referred to herself as something of an “interferon geek”.  

After the meet and greet with the NP, we were off to the Chemo Suite.  No big deals, just took about an hour and a half to two hours to complete.  

Once I was home the waiting game began.  We watched some TV and got caught up on Brothers and Sisters and Gray’s Anatomy (which I might add, was FAR too predictable for a season opener).  I kept watching the clock and waiting for something to happen.  Seven o’clock, eight o’clock, nine o’clock….nothing.  Finally, sometime between nine and ten I started feeling my eyeballs warm up.  I’ve always been able to feel a fever coming from the temperature of my eyeballs.  We checked my temp and it seemed to hover around 99.5.  Nice!  We watched TV for about another hour or so and when I got up I felt some chills, but seriously… no big deal.  Just a little shiver from the chair to my bed and I was good to go.  I checked my temp in the middle of the night and it got up to 100.5 and that was it.  Well, I can’t be sure that was “it”, my thermometer pooped out on me after that.  But from the way I felt, it obviously wasn’t too bad.  

I woke up this morning and enjoyed my coffee, some melon, and some cottage cheese then it was off to get my PICC line put in.  Which another pretty funny story all in itself.

More to come later.

Mark Twain

I took this picture a month or so ago.  I found an ankle bracelet with a message I loved.  Simply, laugh.  What great instructions!  The bracelets in the picture are the melanoma awareness bracelets.  Just my luck, with all of the great colors out there, I get stuck with the blah color cancer. 

Laughter has always been a huge part of my day.  Now, it’s become an essential part of every day.  Being able to report back to you guys with some element of humor has made walking into doctor’s offices and hospitals much easier over the last couple of months.

Mark Twain hit the nail on the head…. “Power, money, persuasion, supplication, persecution — these can lift at a colossal humbug — push it a little — weaken it a little over the course of a century; but only laughter can blow it to rags and atoms at a blast. Against the assault of laughter nothing can stand.”

Nurses and Pictures

I had to spend the night in the hospital last night again.  I’ve had nothing short of some fascinating experiences with the nurses at this particular hospital.  I thought I’d share a few stories.

First of all, I think they have very specific requirements for the male nurses.  The HELP WANTED ads must look something like this:

HELP WANTED. ALL SHIFTS AVAILABLE. HIRING FOR NURSES, NURSING ASSISTANT, AND STUDENT NURSE POSITIONS.  MUST BE GORGEOUS TO APPLY.

One of my nurses was so good looking he almost made me WANT to be sick.  But… back to the stories we go.

On the night after the first major round of surgeries, I was taken into my room and the nursing staff introduced themselves and gave us a quick report of what their roles would be over the next few hours.  “My name is So-and-So and I’ll be doing Such-and-Such…etc, etc.  The nurse in charge was this spunky girl who was amazingly with it and had a great game plan for us.  This was around 7 or 730ish pm. 

Around 10pm it was time for her to be checking the drain in my side and I was starting to feel like maybe I should think about taking a pain pill to avoid any early morning surprises.  I rang the buzzer and in came Hot Nurse #2.  He said he would tell the nurse that I was asking for the meds. 

1015pm, 1030pm…still no meds, still no drain check.  HN#2 comes in again, I explained we hadn’t heard from the nurse and he assured us it wouldn’t be long.  1045pm, 1100pm and Mom decided to go talk to the nurse herself.  The once spunky nurse growled at her and said she would get the meds in a second. 

1115pm comes around and the nurse comes into my room and walks over to the computer.  I looked at the screen only to see her toggling mindlessly between the login and password fields.  She toggled for about 2 or 3 minutes and was barely touching the keys on the keyboard.  It was bizarre.  I laid there thinking something was just off.  I couldn’t imagine she didn’t know the password, she must use it dozens of times each day in different patients rooms.  Then she looked over and asked if I was in any pain.  Um, yeah…I thought that was why you were here.

1145 and still nothing.  Finally, HN#2 comes in and explains that there is an issue with one of the nurses and they are working quickly to shuffle some other nurses around.  Finally around 12am a new nurse comes in and goes to the computer.  She apologizes for the wait and says she will work quickly to get me comfortable immediately.

“Can I ask you something?”, I questioned, “and you don’t have to tell me anything”.

“Sure”, she said.

“Is that other nurse a diabetic?”

“Yes, but she’s almost leveled out now.  We’re getting her home to rest”.

When the nurse had left the room, I waited for Mom to settle down to sleep and I muttered…”I’m so freaking smart”.  Mom cracked up.

Last night was no exception to the goofy nursing saga.  Nurses were coming into my room about every other hour.  Around 4am, however, the freakest nurse came in.  I’ll try to lay out the conversation for you.

Crazy Nurse: “Hi I’m (insert Crazy Nurse name here) and I’m here to take your vitals and weigh you”.

Me: “I think I’m going to need to use the restroom”.

CN: “That’s fine but then we’ll need to get this done”, she said as she’s trying to manipulate a scale big enough to roll a wheelchair onto in the room.

Me: “Seriously, you need to weigh me at 4am? Cause, I’m pretty sure I’m going to weigh the same around 7″.

CN: “We need to get this done, and you really should take those off, they’re bad for your skin”.  (As she tries to RIP OFF one of the EKG lead pads that was left on me.

Me: “OUCH! That’s ok. I’ll take them off…… in the MORNING”.

CN: “I like your hair.  (Cue the Twilight Zone music right about now)… has it always been that thick or is it just growing in that way now?”

Me: “Who knows.”

I should say that about 15 minutes later she came back in to ask me if I knew what my weight was because she had forgotten to write it down.  I was starting to wonder if she hadn’t snuck out of the psych ward and stolen a nurses jacket on her way to wandering the halls.  It could happen.

When Dad came back to the hospital in the morning, I replayed the story for him.  His response? “I don’t know why she had to go and do that.  The other nurse weighed you last night… by pushing this button on your bed.”

Update time… the liver biopsy done yesterday indicated the spot on my liver was indeed another melanoma site.  Dr. Flux Capacitor enjoyed my popcorn humor and said he was confident he had removed all of the dangerous tissue.  He used the radiofrequency ablation technique.  Here is an explanation of the process http://www.radiologyinfo.org/en/info.cfm?pg=rfa&bhcp=1 .  Chemo is set to start on the 29th. 

Since today is the 2 week point from the first set of surgeries, I’m including some pics from then and now.

SURGERY #1 BANDAGES SEWN IN

 

POST SURGERY AUGUST 29TH 2008

Here are some pictures from today… LOTS OF HEALING!  Dr. ENT was just as good as he said he was!

Hospital Hi-jinx

Driving to the hospital on the morning of the surgeries, I was excited to get a wonderful treat (aside from Mom GPSing her way all the way to the hospital on the ONE street we had to drive to get there).  My cell phone rang and on the display was an area code I’d never seen before.  I answered the phone and received the most awesome suprise… the call was coming from PFC Andrew Ostgaard.  In my mind Andrew is a three year old running around with a book in each hand.  In reality, he’s now a Marine recently stationed in Iraq.  VERY recently.  Like two weeks or so recently. 

“I’m glad I caught you before you went in to surgery.”  I was speechless and in tears.

Ok.  Wow.  Just plain wow.  24 hours later I received another call.  “Just wanted to check and see how you were doing.”  I was totally blown away.  Thanks, Andy….  those calls meant the world to me.

Just a little change of plans for this week.  Dr. Flux Capacitor is off until Thursday.  He’s the radiologist who will be performing the CT Liver biopsy and if necessary the Radio Frequency Ablation.  My understanding is that the RFA uses microwaves to kill off any undesirable tissue.  Microwaves, huh?  I’m definitely bringing some popcorn.

PFC ANDREW HAROLD OSTGAARD

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.