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….

 

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….

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.