Kicked out of the Hospital

Friday was quite interesting.  Interesting from an odd perspective.  Let me replay the day for you.

We had planned to go to the hospital for my 2nd maintenance treatment.  As usual, Mom called the hospital in the morning and was told there weren’t any beds just yet, but call back in a while and we’ll see if there are any folks being discharged.  Keep in mind that when they say this, I always wonder if the doctors are walking into patients rooms, taking a look at them and saying…”Yeah, you look pretty good.  You can go home”.

Anyway, we got there and were promptly sent to the lobby for the next hour or so.  Picture me, Becka, and Dad sitting in the lobby with all of our luggage and food for the weekend, watching people walk by us from the front door of the hospital heading for the elevators.  My oncologist even walked by and asked, “No room at the Inn”?  Ha ha…very funny.  Everybody’s a comedian. 

After about an hour, I had decided that we’d waited quite long enough.  We’d finished off all of the lame jokes we could exchange with the nice volunteer lady at the front desk and I started to walk back to the ONC unit.  As I was walking down the hall, my nurse was walking towards us coming to let us know the room was ready.  We grabbed our stuff and headed to the room.

We got unpacked and settled in as the nurses were coming in and out of the room, setting up the supplies.  My nurse, Diamond, let me know it was time to access my port.  I’ve got a Port-A-Cath that was surgically placed on Dec. 19th.  It’s located on the upper left side of my chest about 3 fingers below my clavicle.  We’ve learned some neat tricks over the last six months that have to do with hospitalizations.  My favorite is the little 1 1/2 inch slit that we have cut into old t-shirts.  Whenever my port is accessed a 1 inch needle is inserted into each “lumen” (an oval receptacle) and there are two catheters that are about 4 inches long that extend from each needle.  Each of these catheters can slide through the slit in my t-shirt which allows me to wear my own shirts and not have to put up with hospital gowns.  By now, Dad had to go feed the meter so he made his exit.

Diamond was only able to get one port accessed and had to call the Charge Nurse.  The Charge Nurse couldn’t figure out what was wrong with my port so she suggested they remove the needles and re-insert them.  UGH!  They already stabbed me once and now they wanted to do it again!  Not only that, I have a cream that I can use to numb my skin.  Because we were rushed into the room and hurried into the port access, I wasn’t able to use the cream (it takes 30-45 minutes to become active).  So they stuck me again.  This time they realized the port wasn’t working correctly and they needed to TPA the port.  This is a process similar to using Drain-O in a clogged drain but takes anywhere from 1-2 hours to work.  Lucky me, this time it took 2 hours.  So I took a little nap.

Finally, with the port working, they tell me it’s ok to start the treatment process.  First, they start with the anti-nausea meds, then we move to the Benedryl, then one more medication, then we can move to the IL-2.  For some reason, Dad had decided to wait before leaving.  He didn’t feel like sitting in traffic and just wanted to wait it out.  This ended up being a really good thing.  Keep in mind, we’ve been at the hospital for almost 5 hours now and they still haven’t started my treatment.  Then my oncologist came into the room.  He started to check me, we started chatting about nothing, he started talking with Dad, blah blah blah and then I did it.  I moved his hand over the lump in my neck.  His response wasn’t what I wanted to hear.

He basically told me that he was going to have to discharge me.  He wants to get a CT scan before we move on.  If this is new disease, then we treat it as such.  If it’s not, then we biopsy it and find out what it is.  I’ll go into his office tomorrow for the scan and we’ll go grab lunch and wait for the scan results. 

On the upside… I got to enjoy a great weekend that I was sure I was going to have to spend in the hospital!  Not such a great weekend for my Angels, though.

Gamma Knife Pics

Measuring my head

The halo is attached.

Taking time out for a perm.

Dr. Pagnini is the oncologist (front left) and Dr. Apuzzi (behind me) is one of the pioneers of the Gamma Knife procedure.

Laying down, about to enter the Gamma Knife Machine

I love a good miracle!

Last Thursday we were able to get in to see the Radiation Oncologist at USC.  We scheduled the gamma knife for this past Tuesday.  We all felt extremely positive leaving the doctor’s office.  With this type of brain lesion they expect a 90% total success rate with the Gamma Knife.  I’ll take a 90% success rate anyday!  We didn’t have a timeline set up specifically on Tuesday so on Monday morning I called to find out what time they were expecting us.  The words that came out of the phone absolutely sent me through the roof!  “We’ve hit a glitch with the procedure.  Your insurance company has denied it.”  I’ve never been as fearful as I was in that moment.  For the next 24 hours we raised Hell with the insurance company.  Both of my oncologists vowed to make phone calls regarding the necessity of the procedure and it was GAME ON!  The nurses assured us they would hold our 1pm appointment time just in case a miracle happened. 

Around 715am Tuesday morning the phone rang.  It was my mom’s only ally at the insurance company (who had taken the day off the day before).  She said she got my message and the message mom had left for her and was returning our calls.  After we filled her in on what had transpired the first thing she said was “there must be some mistake.  Let me look into this and I’ll call you back”.  Within an hour we had the approval.

 I didn’t have any fear of the procedure (yes, it was a little unnerving that they were going to work on my brain on an outpatient basis…would you like fries with that?), I was most terrified of the pain when they had to screw the halo on me.  Amazingly, I honestly didn’t feel a thing.  They knocked me out for about 10 minutes and when I woke up there it was. 

Considering this procedure has a 90% success rate, I’m feeling very confident.  Far more confident with the procedure than I am with my Angels.  At least my doctor didn’t walk in the winning run last night.

By the way… I’ve got some fantastic pictures of the Gamma Knife Process and the doctors and nurses it took to make it happen.  I’ll get them posted eventually, but I don’t have access to them right now.  They are on my sister’s camera card and she took it with her…… to Europe.

Good News, Bad News

The slacker blogger returns.  I can only apologize f0r the gaps between updates, but cut me some slack… I’ve got cancer, remember?

Since the last update I was given the option to complete a 6th round of the bio-chemo.  I was told by my doctor that the 5th round was unexpectedly effective and therefore he thought that a 6th round might be effective, as well.  Remember, they removed one of the chemo drugs for these treatments because it was making me so terribly sick for so long after the hospitalization.  That being said, I felt like I would be foolish not to opt for the 6th round.  If there was a chance that it would be even half as effective as the 5th, then I needed to go for it. 

The recovery from the 6th round was a bit of a struggle.  Once of the side effects of bio-chemo is a potentially dangerous decline in blood pressure.  I struggled with this twice in the hospital.  Once passing out in the bathroom and hitting my head on the sink, resulting in a nice little trip to the CT scanner.  Gratefully, once again (using my family’s words) there was nothing in my head.  I don’t remember the timeline exactly but I believe it was the following day, this time I was able to at least tell my sister that I felt light headed and she was able to get me into a chair before I passed out again.  When I came to, she was holding me up and my other sister was yelling for help out the door. The next thing I remember there were MANY people in the room helping us.  My blood pressure seemed to stabilize after that but we weren’t done with the side effects.

Hallucinations worked their way back into our world with this treatment.  Both in the hospital and once we returned home.  I don’t remember any of this stuff, but I’m told I was very concerned about my cats.  (Who, by the way, are still staying with my Dad and he is still acting like a typical grandparent and spoiling them like crazy).

I had more scans done yesterday.  A PET scan, a CT scan and an MRI of the brain.  The PET and CT scans showed a couple of metabolically active spots that we already knew about but absolutely no growth in those areas.  We were quite pleased with this news.  The last round was also very effective in reducing the size of the two primary tumors in my liver.  WE WERE EXSTATIC ABOUT THIS!!!  Dad and Rebecca were with me for the results and my doctor even hugged me and told me how glad he was that it looked like I was recovering so well.  As we were getting ready to walk out of the room Rebecca started to tear up and we looked over at her.  “So this means the brain MRI was good?”, she asked.  My oncologist looked at me and said that he hadn’t realized that I’d gone for the MRI.  He left to go pull up the results.

When he came back in he was the most somber looking I’d ever seen him.  “I need to talk to you about your MRI results”.  I felt my stomach jump into my throat.  There’s a 2 centimeter lesion on the sensory portion of my brain.  He told me he felt like this could be handled efficiently by a doctor with a Gamma Knife at USC Norris Medical Center.  The Gamma Knife is a radiation procedure.  Interestly enough it’s done on an outpatient basis.  Seriously????  They can work on your brain and it’s outpatient??? Are you kidding me?

As it stands right now, I’m waiting for the Gamma Doc’s office to call.  I’ll either go in today for the consult and get the treatment tomorrow, or I’ll go in tomorrow for the consult and Thursday for the treatment.  Either way we are still scheduled to start the maintainence program on Friday and I should still be eligible for the Ipilumimab in August as planned. 

As usual, we have to look at the upside to all of this.  When I spoke with my doc about the maintainence program he said it was totally fine to work around my summer plans for the hospital admit dates.  This means I’ll get to go to Idaho in June to see my cohort graduate!!!  It also means that I’ll get to attend my friend’s wedding on July 4th and then leave for 4 more days in Idaho on the 5th. 

I’m pretty confident that things are going to be fine and that this is nothing more than a hiccup in the road.  Wish me luck!!!

******Since this was posted I’ve found out that the Gamma Knife procedure will most likely not be done this week.  I misunderstood my doc when he was explaining everything (this is why you should NEVER go to the doctor alone in these situations).  We need to wait to hear from the doctor at USC and his scheduling department.  More to come soon.

The Glory of Easter and Gray’s Anatomy

Now THERE’S a combination.
I’ve been home from the hospital for a little over a week now. Feeling quite a bit better but still not 100%. Still not 80%, but making progress. Removing the Vinblastin drug from the equation certainly made the treatment more tolerable this time, the downside has been an insane amount of itching since I’ve been home.
Last night was quite fun. Most of my family went to enjoy The Glory of Easter production at the Crystal Cathedral. It blew me away. They had an enormous cast and worked wonderfully with all sorts of live animals and of course, a fantastic telling of the story of Easter. WOW!
One last note for today. I can’t help but mention one of the current Gray’s Anatomy storylines. One of the doctors has been diagnosed with Stage 4 Melanoma with brain and liver metastasis. Last week it was mentioned that the character would undergo IL-2 treatments. Keeping in mind that everyone who goes through these treatments is impacted differently, I’m curious to compare my experience with that of the character. I should mention it has been widely publicized that this actor has wanted to leave the show for many months and unforturnately the prognosis will probably not be good for the character. It will be interesting, nonetheless.

Hedder’s Update

Greetings from Santa Monica. Today is Wednesday. Heather was admitted last Friday for round 5 (7 admits) and will hopefully be discharged tomorrow. It has been a rough admit. She will be getting more of my blood today. I am kind of bummed cause for as much as she has gotten from me, she still doesn’t like Dr. Pepper! Go figure. Anyway, here is the run down of the plan…
Her last scans again showed shrinkage, no new growth, and nothing in her head…Duh! While this is fantastic news and the chemo regiment has been working very well, we do need to change things up. Because of the intense chemo and bio chemo she has been on, her body just can’t handle any more of the toxicity. So what she will do is a small maintenance regiment 1x/month until August. These will be 3-5 day admits of IL2 and Interferon. In August, she will then begin a clinical trial. So while it is a little frustrating to stop something that is working so well, we also understand that it must be done. We have tremendous faith in the plan her doctors have for her, and we just need to take this step by step. The once a month short admits will allow her to go home to Idaho and return here just about 1 weekend a month. She is stoked on that. It will also allow her to finish up some teaching, visit with friends, and just be at home with her kitties. She will stay here at mom’s until this new regiment starts as we have to see how she / her body handles it.
Well, that is about all for now. Beck has been amazing in taking care of her. She is quite a trooper.
Thanks for all the prayers and well wishes. Keep ‘em coming.
Melissa

Some good news this week

Sorry for the lag in updates…. (that’s all I have to say about that).

I had my second round of restaging scans this past Monday.  We were blessed to receive more good news this time.  The scans showed no new growth and even additional reduction in the tumors!  This is fantastic news.  We’ve been celebrating all week.  The plan now is for me to be admitted for Round 5 tomorrow and this will be THE LAST TIME.  I’m quite excited about the idea of not having to do this anymore, for sure.  It’s getting harder and harder to recover from the treatments.  After Round 4 it was 21 days before I was able to tolerate food and even had to be hospitalized for another 5 days.  I’ll be glad to be done with this stuff.

The plan moving forward is to start a maintainence plan.  This will entail being in the hospital for only one weekend each month and receiving minimal doses of some of the drugs I’m getting now.  My doctor says it’s extremely tolerable and many people are able to go to work M-F and handle the treatment.  This means that potentially I’ll be able to head back to Idaho in the near future.  Speaking of Idaho… check out the picture below.  My Idaho family came to visit a few weeks back and brought me a little piece of home: a snowmobile and some snow!!!

I’ll try to remind either Mom or Mel to update from the hospital….

Missing Nana Already

Nana passed away last Friday morning.  I found out when at 5:30am Mom and Dad came into my hospital room (where my sister’s and I were) and Mom whispered, “Nana is with Poppy”.  I instantly knew what she meant.   Personally, I think after all of the awful trades the Angels have made in the offseason, Nana didn’t want to anything do with baseball this year.

 

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.