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….

 

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.

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

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.

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 !!!

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!