New Treatment News

Well today was a rough one. I had my end of study appointment which concludes my receiving herpes injections into my neck every three weeks. I am happy about that! I am sad to not see my team of doctors and nurses every three weeks, but know I will see them lots while I am still getting treatment. They are like a little side family now that I see them so much!

Today marks one year since my first (and traumatizing) biopsy. A year since I knew something was wrong. I think my body/muscle memory kicked in and made me extra emotional at this appointment. I just am frustrated that I have been dealing with this all for a year+ now and still fighting – and that it is worse! My biopsy on Monday was better, still not fun or good, but they handle things much better here than my first one ever. I don’t even need drugs anymore. I still try and pretend I’m all tough, but regardless I am freaked out and end up crying a bit.

Today in my appointments I got some bad news. Not only has the insurance denied the combo drug, it also has denied the solo drug Keytruda. Their reasoning is that I am BRaf positive and need to complete the BRaf inhibitor treatment before starting anything else. This is the Band-Aid treatment I talked about a few posts back. My doctors and I agree though that I cannot wait for the appeals and claims to be completed to start a treatment and need to be on a treatment regardless of what it is. It is too dangerous to not have me on anything and it has been 4 weeks since my last treatment.  So I am forced to go on the one thing I didn’t want to do.  Although it will work in the short term – it is that long term I am concerned about.

Regardless they put in the prescription and I picked it up from the pharmacy today. I just have two bottles of drug that is supposed to be a cancer killer… So so strange to me. I just think if you are going to kill cancer then you should be a little more aggressive than a couple pills. But maybe they will kick me on my butt… who knows! I have chosen to start them on January 1, 2016. Start the New Year with some sort of new-ness.

The silver lining is that if the drug company does grant me free drug I can come off of this treatment and switch to that. And in the meantime it should shrink my tumors a bit which will help with the constant pain I am in.  I really hope this is the case…

So strange I have cancer drugs in my fridge…

Christmas 2015

Christmas is a time of family and fun – and me getting spoiled like a child from my family.  This year was no exception.

Christmas eve we spend with my extended family enjoying some home cooked Italian food and playing bingo for money. It is a mellow night and it is always good to get the big family together.

Christmas morning is spent at my parent’s house with my parents and sister and we have sweet rolls (that my aunt gives out on Christmas Eve every year and they are the best ever…) and then start opening presents. My family goes big on Christmas, even when we say we aren’t going to. This year I was engulfed and surrounded by presents and couldn’t even see my mom next to me!! It was insane, but in a good way! We spent the morning opening the presents and seeing the fun things people got each other, laughing at some of them. We all know what we want, let’s just say that.  After all the gifts are done and we have some clam dip (it’s a tradition) we all head our separate ways and pretty much all take a nap.

My family doesn’t do anything on Christmas night, so I decided to make my own plan for the evening. I had gone and got some word searches, Sudoku and RedBox movie codes with a popcorn and decided to go up to Huntsman and hand them out to the people who were still there on Christmas, one of them being Mandy.  It was fun to hang out with her and her family on Christmas – they have taken me in as another daughter I believe. No complaints here!  I walked around to the different rooms and sadly wasn’t really welcomed into more than a few – I think people were just over having people come in and wish them a Merry Christmas. I left them a goodie and headed down the halls. I was happy to see that there were more empty rooms than full ones, definitely a good sign. A couple people were extremely grateful and wanted to hear my story as well. They made it all worth it. Also the people that were there in the halls taking a break from visiting their loved ones were very appreciative and also need some recognition.

My dinner plans fell through (twice!) and so I spent the night with Mandy watching a movie and relaxing, it was very nice. I then joined my friend late and enjoyed some Chinese takeout. Definitely a Christmas to remember!

Merry Christmas everyone! Hope it was full of family, friends and LOVE (oh and some tasty food!)

Scans and Big Appointments

I had my MRI and CT Scans last night (8pm what?) and this morning and also my appointments with my entire team.

The good news is that besides my neck, the cancer has not spread. The bad news is that in my neck there are now 7 tumors, all growing. 7 f’rs. No wonder I have had so much pain lately, there isn’t any room for them all!!

I officially withdrew from the clinical trial and had to verbally state “I refuse drug today and going forward, I withdraw from the study.” Kinda strange but I get it. Then all my appointments started. I was happy to have my mom and best friend Ashley there for the appointments, definitely helped break up the day and make time go faster.  The doctors talked about the next steps and drug options. I came into the appointment dead set on starting Keytruda and hoping to start the following week. They then presented another drug option which actually is 10% more effective than Keytruda. It is a combination of Nivolumab and Ipilimumab given for 4 treatments (every 3 weeks) and then just the Nivolumab after that for 2+ treatments. This works the same as Keytruda alone, but with an added kick. It is also harder on your system – but also harder on the cancer. There is also a third option after the combo or Keytruda, which is a BRaf inhibitor since I am BRaf positive (a gene mutation in my tumors). Although this has proven to be effective, it is only effective for 2ish years and then the cancer returns. It is more like a Band-Aid in my mind.

I have decided to go for the combo – and we are pretty sure the insurance will deny the drug so we are going to petition for free drug if that is the case.  I should know in the next day or so (but Christmas kinda messes up the timeline) but I will have to see!

For now I have to do a biopsy for new drug and to end the study. I hate them with a passion!! Hopefully it is the last one I have to do. And that I start treatment next week!

Gotta start killing off these f’rs in my neck!!

****Update****

Well that was quick, they denied the combo drug within minutes. The reasoning is cost and that I have already received one round of Ipilimumab and it isn’t usually given more than once. We have now sent in an appeal and a petition for free drug.  Hopefully we hear back soon on their answer.

The not so happy part of my friend’s wedding day…

As I was walking to the temple to join my friend on her wedding day I had this constant pain on my neck/chin and it just had gotten worse in the past few days. Thinking it was just my giant tumor pressing on nerves and whatnot, I put my fingers up to my jaw line to try and disperse the pain (for some reason I feel like touching the area of pain makes it better… it doesn’t lol) but as I did that I felt a lump. Yep. A new f’n tumor. I felt around a bit to make sure it definitely wasn’t the large tumor just spreading out, and it definitely was not. It is its own beast. I also felt a new one behind my ear as well later on that day. I called up to my doctors immediately and since my scans and appointments were less than a week away they just told me they will address it then.

My neck has been a pretty constant source of pain in the past 6 weeks. The past 3 have been increasingly bad. I have had to sleep in only one position and it definitely isn’t my favorite.. But I need sleep so I will do what my body will allow.

My appointments can’t come soon enough as I need to switch off this clinical trial and on to a different treatment – hopefully Keytruda. Keytruda just made national news as ridding President Jimmy Carter of all his tumors from Melanoma in a short 4 months. This is our next line of defense and I can’t wait to hopefully see the same results! I’ll see what the scans and doctors say on Tuesday!

Friend Amy's Wedding

I had the pleasure of being the Maid of Honor at a dear friend’s wedding yesterday.  It was held at the Salt Lake City LDS Temple. Because of their faith I wasn’t allowed to see the ceremony but was able to join them right after and we got some great pictures on the steps of the temple.

That night was a reception where they transformed a wardhouse into a beautiful winter oasis and it turned out really pretty. The photo booth was a lot of fun and I even got to serve up the cake.

It is crazy now that more and more of my friends are married (and have kids!) but it is fun to be a part of their celebrations.

Congrats Amy and Scott (and Holden!)

My Temp Job

For December I decided to work a bit since I was feeling good and have gone back to work at my old job, Market Street Grill in Cottonwood. I will be here up until Christmas selling gift cards. It is so strange to be back! I worked here for almost 7 years and have been gone for almost 3. It is strange to be back and see so much of the same but also how much has changed. It has been great to get to see my favorite managers every time I work (one being like a second dad, and how I scored this last minute job).  They sell hundreds of thousand dollars in gift cards just in December so I am here to make that a fast process for the people needing them.  And lets be honest, it doesn’t hurt to be able to eat some great food in the process. I have missed the weirdest things – tuna sandwich? I mean really!

It’s nice to work again, and to have a distraction from my ever growing neck and the pain that comes along with that. If I am busy I don’t notice it as much which is great.

Here’s to a busy December!

Update on my friend Mandy

As many of you have followed my journey you have seen that I have become near and dear friends with my melanoma soul sister, Mandy. We are fighting the same beast (hers has a little more aggression than mine sadly) and it has been a really hard few days/weeks for her. She has been inpatient at Huntsman Cancer Institute since the day after Thanksgiving.  What started with severe pain in her back, led to a very bad infection pocket in her leg with lymphedema. The infection came back as staph and she has done several rounds of the IV antibiotics to kill it. Her fevers are up and down and they won’t send her home until they are under control. They started radiation on her tumor in her groin to try and shrink it to reduce the intense and crippling pain she is experiencing. During her stay she not only has acquired pneumonia but she also has formed a new blood clot in her bad leg. She just can’t catch a break. I’ve been trying to spend as much time up there as I can as I know what being in there is like and once you are alone your mind starts to wonder into some not so great thoughts. It was hard to leave her when I went on my trip. Not only just to leave and have her not have as much support (I mean this lady has a support system for miles!!) but more that I feel guilty to be feeling good enough to head on a 6 day cross country adventure. I know I shouldn’t feel bad about it (she gets really mad when I say I do) but I do. I just wish she didn’t have to endure so many complications and could be out there enjoying life AND kicking this cancers ass. I hate that it is beating her up so much!

I’m happy we have each other though and I know if the tables were turned she’d be by my side as much as possible too. And I’d want her to be out enjoying her life too.  I just really wish she could catch a break and start to beat this cancer once and for all.

Keep her in your thoughts and prayers if you’re a prayer, I know her and her family will appreciate it!

6 Days of Fun and Memory Making

I just got back from an amazing, once in a lifetime trip. I say once in a lifetime because I don’t think it is usually the combo trip people are drawn to. I just spent 3ish days in New York City and then hoped on a plane to Orange County, California where I spent another 3ish days. The reason I did such a thing is that I had a “use or lose” flight credit on Delta and these two places where the places I was deciding between. I decided to just look and see what the price would be to do both – and it was only $30 more! How could you pass that up?! Umm, you can’t. So I booked it!

I visited New York in June of 2002, just a few short months after 9/11 so the city was still somber and in major clean up mode. I wanted to see the city rebuilt and back on it’s feet – and also two of my closest cousins live there and I have always wanted to visit them since they moved there years ago. I got in late on Thursday (the day after treatment… cutting it close and really pushing the limits) and we went to a great dinner a few doors down from their cute East Village apartment. The next day I spent touring the city on my own while they had to both work. I saw Grand Central station and the gazillion people that pass through there each day. Amazing really. I then walked over to Rockefeller Center and caught the last 2 minutes of the early part of the Today Show, still pretty cool. I then walked into 30 Rock and saw the gift shop for all the shows filmed there. I then hopped onboard the “Big Bus Tour” to see the city from a double decker bus. These are my favorite in a big city or overseas. You get to see so many things and learn about random things that you normally never would. I covered lots of ground through out the city, way more than I would on foot. I jumped off around Ground Zero so I could get a look at how much it’s changed since the last time I was there. I popped into a Starbucks and rested for a bit and recharged (cell phone and caffeine) before heading into it all. Once at Ground Zero it was amazing to see how big the towers were and just how many lives were lost that day. As I was walking around I came across the “Survivors Tree.” This tree was found in the ruble, barely still alive. People fought to keep it alive and nurse it back to health. They did so, and it now is growing beautifully and was the only tree at the memorial with any color left in its leaves still in the middle of the cold. As I stood there looking at the tree I began to tear up and eventually lost it. This tree represented so much of what I am going through. I will be just like this tree – a survivor. It was an incredibly moving moment for me. After that I hoped back on the bus and saw the rest of the tour, ending in Time Square as it was getting dark and all lit up. Pretty great day. The rest of the time was spent wandering through other parts of the city with my cousins, eating up all the good things and all the ice cream we could manage (even though I think we all could still have gone more!) I wish my stomach was bigger cause there seriously was so much amazing looking places to eat! Just another reason to go back.

After my busy 3ish days in NYC I caught an early flight to Orange County to see my best friend and her family’s new home. Once I got there I was able to see her oldest daughter (almost 3 years old) perform in her first gymnastics recital. And man was it adorable!!  The next day I spent some time at her work seeing what she does and then enjoying happy hour with her. The next day the pacific ocean was calling me so we went and spent some time there and ate some good local goodies. I love putting my feet in the ocean – something about it resets my mind. I always have to get a picture of my toes in the sand or water and this time there were some additional little feets with me. So precious. Ash and I got to have a great night out with just the two of us with delicious food and drinks, always a good time.  Then my vacation had to come to a close and I headed home to rest and get into the Christmas spirit.

It was truly a vacation to remember and I hope to be doing it more in the coming year for a couple reasons. For one, I hope to feel good enough to travel a lot and two I have just been listed as a companion on JetBlue for flight benefits and they fly directly to these two places! Pretty great deal if I must say so! Hoping to use those benefits soon and often!

I am so lucky that I felt good enough after my treatment to enjoy such a vacation – I am spent now though! Ready to relax a bit and enjoy the holiday season.

Possibly last injection...

Today was treatment day. Heading into it I had a feeling that the tumors, all of them, were all bigger and was right. I definitely have a third tumor and possibly a forth in my neck. The large tumor is 8.5cm x 7cm and the smallest is 3cm x 3cm. I can't remember the middle ones measurements - kind of like middle children get forgotten.
Once we measured them we talked about thoughts on what is most likely going to happen at my next appointment after scans in three weeks. Most likely we will switch treatments to a PD-1 inhibitor drug. Most likely it is Keytruda, but that will be something decided at the next appointment with my medical oncologist. They said that if it does start to grow fast before the next appointment to call as we will possibly scan sooner than the three weeks. I wouldn't be able to start the new treatment for another 4 weeks regardless. This is because the clinical trial I am on needs biopsies done 4 weeks after final injection and I can't be on any new/other drugs.
I had a feeling going into the appointment this is what the outcome would be and I also knew there were more tumors as I could feel them so I wasn't surprised or shocked. It is just what it is. I feel comfortable with moving away from the clinical trial. It has helped to make things stay localized and not spread, but we need it to do more. So we shall see if that was my last injection or not. It was a tender one if it was!

I have been up at Huntsman a bunch lately because my dear melanoma friend Mandy has been admitted for the past 6 days. She was having terrible and sharp pains in her back and lungs and her leg (she has lymphoma due to groin lymph nodes having melanoma and are enlarged) continued to be painful and bothersome. After being there for two days they realized an infection was starting and forming an abcess deep in her thigh. They drained that and turns out it was staph. She had a fever for two days straight and it finally broke last night. She will have to stay in the hospital until she finishes the IV antibiotics needed for the infection and until they can control her pain (which isn't really happening sadly) I'm happy I have been able to be there for her as I know what it is like to be in there for multiple days. It is hard to be alone up there, you start to get into your head and then it takes over. You begin to wonder how you got there and how this is your life. How am I really a cancer patient? How am I this sick?! It is a vicious cycle so I was happy to help break it up and brighten her spirits when I could. It was also good to just hang out with her cause we don't do that much since she doesn't feel good most of the time. She started Keytruda a week ago, so we will be on the same treatment again if I begin that.

On better news, I leave for my cross country trip tomorrow! First stop NYC! I had a flight credit (thank you back surgery) that needed to be used by 12/15/15 so I seized the moment and am going to be on my way! I will be there 3ish days and then head to California to see my best friend and her cute family for another 3ish days. It is definitely a weird trip to back for, going to cold and the beach on the same trip! I plan to do all sorts of touristy things when I get to NYC and really hoping I feel ok after todays treatment. Even if I feel semicrappy it will be fun to see the city all decked out for Christmas. In California I will be able to see my Goddaughters first dance recital! How amazing is that? I can't wait.

Here's to one day at time, for now and always.

xoxox