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.

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.    

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?