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….

 

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?