Round 4 delayed

Doing much better than last posting.  Feeling really good over the last 4-5 days.   The only issue is the continued neuropathy which makes writing and typing difficult.  I’m cautious not to increase the nerve medicine because of the potential impact on my liver.  My neuropathy is minimal…I sat in the doctor’s office last Thursday and met some other melanoma patients while in the waiting room.  We had a good deal of time to talk with each other.  I became instantly grateful.  I realized that while I have experienced some discomfort  throughout this process, these folks were suffering.  I’m not trying to minimize what I have been through, but just as an example the lady I spoke with was on the same nerve medication I’m on.  They’ve had to continually increase her dosage so that now she’s taking 8x the dosage I am.  The man I was speaking with was probably about my age and in so much physical pain he could hardly sit in a chair.  These are the people I pray for. 

 And my dear friend Wally.  Wally and his wife Linda have become fast friends of my family.  They also have most of their follow up appointments on Monday morning like I do.  Wally is having difficulty with the circulation in his legs, yet when I walked in the room he stood to offer me HIS chair.  I quickly declined, yet I was in total awe at the character of this man.  Please pray for Wally.

As for Round 4 being delayed, I was scheduled to be readmitted last Friday.  My platelet counts were too low and my doc decided to wait until tomorrow to admit me.  This time Rebecca will be filling in for Mom at the hospital for the first 3-4 days.  She wanted desperately to be involved in the process so we figured now would be a good time.  Additionally, it gives Mom a chance to stay home and finish out the work week.  Dad again will be the schlepper as he drives us all back and forth from Santa Monica.

Other than that, I’m recovering from wounds I received from a fall yesterday.  I was running in the street chasing a big dog that snuck into the backyard and stole one of my mom’s shoes.  It’s a great story and well worth the wounds and bruises.  I’ll be sure to share it with whoever calls. 

Have a great week and I’ll ask Melissa to do at least one update from the hospital.

Really struggling

It’s been really difficult to find the umph to update here.  Round 3 has been just as difficult as round 2 was.  I’m dealing with some depression issues on top of terrible nausea.  Beyond of all this, Nana has been placed back in hospice care and I really haven’t been able to visit her at all, either because of her health or mine.  I miss my kitties and I miss Idaho and I’m tired of being in a good mood all the time.  My family has been amazingly wonderful and I feel guilty when I’m in a bad mood considering all they’re doing.

Nothing Short of Miraculous

This is the letter I sent to my cohort this evening!

 

Hi Everybody!

I wanted to say Hello to everyone and pass along and update.

 I’ve completed two “rounds” of the treatment we decided on once I arrived in L.A.  Each round consists of being hospitalized for 5 days.  Both rounds have come with their own set of issues, including going up to 14 days without food because of the intense toxicity of the treatment.  I’ve lost 45 pounds (no complaints from me there). 

Here’s the most important part… Yesterday I was re-scanned, both a PET scan and a CT scan.  The results were nothing short of miraculous!  ALL of the tumors have shrunk in size and my liver (which was almost in failure when I arrived here 6 weeks ago) is now considered “slightly” elevated.  Just to give you an idea of the importance of the liver details: when I got to L.A. my liver function “score” was over 600.  During the 1st hospitalization it rose to over 900.  Now my score is 254 with 243 being the high end of the normal range.  I’m ecstatic!  My doctor even hugged me after giving me the news!

 

I am so grateful for everyone’s prayers, emails, and phone calls.  Feeling the support of my Idaho family has been vital for me.  I can’t wait to get back there!  For now, I go back in for round 3 on Friday.  We’re going to complete 2 more rounds for sure to try to either eliminate or make the remaining tumors metabolically inactive. 

 

Keep plugging away… I know you guys are in the toughest part of the program and your time is so precious right now.  Don’t forget to enjoy yourselves once in a while!

Love you all!

Heather

Update From St. Johns

Hello All, It’s Melissa. As you can imaging we have been pretty busy so we apologize for the delayed update. Heather was admitted for Chemo Round 2 on Friday Jan 9th. The admit went pretty much the same as the first… it was rough! We opted to stay at the local Best Western instead of going home after discharge on Tuesday the 13th, as we needed to be back in the Onc Doc’s office in Santa Monica at 8am on Wed. So, Heather, Mom, Dad and I camped out at the Western. Mom and I actually had a complete meal (well as complete as you can get at IHOP) that night cause dad stayed with Heather in the room. Since that Wed Heather had been staying back at moms. Now recovery after the first round was a very long and hard process, and unfortunately round two was worse on her. Which brings us to today. Today is Monday January 19 and she is currently eating a popsicle which is the second thing she has eaten in 11 days… yes 11 days. (The first thing was also a popsicle about 2 hours ago). Due to that and continuous vomiting, the doc called us in this morning and admitted her strait from the office. The goal for this admit is hydration, nutrition, and vitamin replenishing. No chemo, that doesn’t start again until January 30th. So I am camping out with her here at St. Johns. Doc just put her on a clear liquid diet… DUH! While that was obvious, however him writing it in the chart means we don’t get any more trays, which means… I don’t get any food! I know, I know, but why not feed me?!? The cafeteria food (what actually fits in to my restrictive diet) isn’t great by any means, and it’s expensive. So the Doc just bursts my bubble. Oh well. So Heather is savoring her popsicles, Gatoraide, Jello, and Ginger Ale. Me… I’ll manage. We aren’t sure how long we are staying, possibly 4 days per our awesome nurse Kate. If so, my mom will swap with me on friday as I have to be in my surgeons office on friday afternoon (I had a lumpectomy on Thursday). My mom is filling in for me at my dad’s follow-up appointment tomorrow with his Onc. Doc. See, I told you we’ve been busy. Heather is in good spirits especially since this admit is geared toward just feeling better, and in her words “cause i can have popsicles!” We will update again when we are able. Now I am going to try and convincer her to help me with my homework before the Ativan kicks in. Oh well, too late.
Please keep sending the thoughts, prayers, and well wishes.
Love, Melissa

IT’S WORKING !!!!!!!

Great news…. I had my check up with Dr. H yesterday and he’s thrilled with the progress.  I almost felt like he was a little shocked by the results of my tests.  So far, here’s what we know:  My liver function tests are the lowest they have been in months.  When I got to the clinic three weeks ago, Dr. H explained that when someone’s liver function tests are twice the normal level, that person is “rushed” into treatment immediately.  When they ran my tests, they found that I was at 3 times the normal level.  That terrified me.  The results yesterday indicated MAJOR improvement in the liver. 

The other exciting finding yesterday concerned a tumor that we recently found in my left bicep.  Three weeks ago it was the size of a silver dollar and now it’s shrunk down to about the size of my little finger nail.  It’s amazing to actually be able to feel the improvement with my own fingers!!! 

I’m feeling better each day.  By the time I go back for Round 2 on Friday I should be completely back to normal.  Just in time to get zapped again.  I have to say, though, having the knowledge that the treatment is working sure makes the idea of having to go back to the hospital for the better part of a week easier to swallow.

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….

 

Update from Mom and Mel

We arrived at St. John’s on Friday at 2pm to be admitted.  Surgery was supposed to be at 4pm however they were backed-up and didn’t take her for her port placement until almost 7pm.  So mom and I moved in to her room, decorated, blew up my bed, and got things situated.  She finally got to the room at 10pm.  The surgery was a piece of cake, she did great as expected.  Her chemo regiment started at midnight following a 2-hour intense hydration period which is done prior to every round of chemo.  She is receiving Vinblastin, Cysplatin, Interferron, and the doozie is the Interlukin 2.  It is a 5-6 hour process of hydration & chemo.  Today is day 3 which is expected to be the worst.  Mom and I have been prepped that this regiment is a very harsh protocol, however she seems to be handling it extremely well.  She sleeps most of the day and night, has not had any significant emesis, but is extremely fatigued.  She has had some intense nasal congestion which has irritated her throat from the mouth breathing and it has exacerbated her retching.  She is now receiving some breathing treatments in addition to applying vicks vapor rub which dad dropped off today… its helping a little.  Besides the fatigue and breathing, her other biggest issue is the amount of fluid retention this regiment entails.  She is receiving thousands of ounces of fluids every day, and her output is minimal.  In addition, every time her BP drops it requires additional fluid. Her IV pole is quite a site, two poles with 5 IV regulators. At the height of the chemo administration she has 8 bags hanging.  Her nurses are fa-nominal!  They are so knowledgeable, helpful, and treat her like their own sister.  I was able to help her with a very brief shower today which took everything out of her.  But she is feeling better and refreshed, and were ready to hit dose 3, 4, and 5 head-on.  She hasn’t been awake long enough to check the messages on here, but as soon as she can she will.  We will try to update again in a couple days.  We are still on schedule to go back to moms on Tuesday, but we come back on Wed for a 3-4 hour hydration.  However she will be home for X-mas, and we are all thrilled for that.  Feel free to keep the messages, prayers, and well wishes coming. For those of you who have asked, mom’s address is:

528 Breezewood Ct., Brea, CA 92821

Thanks to everyone for all the support.  Melissa

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…