New Plan... For the 6th time

Today was the day to decide what we are doing next. It was my appointment with my general oncologist. Since I hit toxicity and formed auto-immune hepatitis from the Nivolumab/Ipilimumab combo I am not allowed to proceed because the risk of liver failure is basically 100%. And if that happens then I am not a candidate for a transplant because of having cancer. Obviously this is worst case scenario but we aren't going to risk anything.

There is a couple options available still, one being a new clinical trial. It combines an injection into the lesions/tumors and also has infusions of Keytruda. I do not remember the official name of the injection but it is IL12, and very potent and it sounds crazy. The injections are supposed to be extremely painful and invasive. The tumors would double or triple in size before going down. With all that said it is showing to be very promising in the long run, but things would get worse before they got better.

My doctor basically said he has put me through the 2 hardest treatments and this would be number 3.
I was gearing myself up to sign on to this intense and invasive treatment and then we realized I am not eligible due to my high steroid regimen I'm on. I would have to be off of it completely before starting and that wont be for at least 6 weeks. And at that point we will look at it all again.

That brought us to figure out what we can do. Basically we need to get a handle on the tumors and get the pain down. This can be done through radiation or going back on the BRaf inhibitors. Because of my steroid regimen I am not eligible for any new treatment but can revisit old ones. We decided against radiation (thankfully!!) Because it has the potential to take options off the table later down the road. That left us with the BRaf inhibitors. We know I respond quickly to these and hopefully it will shrink the tumors so I can have some pain relief. We will stay on these until I hit the plateau again (it is inevitable that I will, almost all patients on this hit a plateau within a year). Although I don't like to see my options shrink, I am ok with this plan. I know that I tolerate the inhibitors well and feel pretty normal on them so that makes me happy to know that I can enjoy summer and won't be too sick. My Sun sensitivity will increase again but I have hats and all the sunscreen anyone could need!

So new treatment plan but not new treatment... Treatment 5 part 2?

I should be able to start the meds the beginning of next week. I will also have new scans to restage me and make sure we are still just dealing with tumors in my neck. Let's hope they have still stayed localized.

I'm excited for the holiday weekend and fireworks and hot dogs and friends. Now if I could have an adult beverage that would be even better... Damn liver!

Big O

As many of you know I drive a funky car and for some reason can't let go of it. It is now a random part of my identity and I just don't know what I'd do with a normal nice car. If you don't know about my creeper van, it is basically a caravan transformed into a cargo van with a cage and no seats in the back. Wide open space, enough space for a full bed. Anyways, that's ol' blue and I for some reason love it.

But it's got lots of miles and tends to run great and then not so great. I have been putting off fixing a bunch of things just cause life has been busy and obviously other things take precedence. My dad offered to pay for the things to get fixed, and I knew it would be a lot. We took it in to Big O like always and they fixed her all up. When we came in to pick it up I was just waiting for the bomb to drop as to how much it would be. He put the bill down and I saw the damage, close to $1000.... Yikes!! And then he says, "it's taken care of". The owner knows what our family has been dealing with and was so gracious and generous that he took care of it all. He said I had enough to worry about and I needed a safe car to be in. Truly amazing. My dad and I both teared up and just shook our heads in disbelief.

People are good and kind. Even in this hectic crazy world if you put out good energy it comes back - when you least expect it.

I had to thank them so I headed to The Baking Hive and stocked them up on all the chocolaty, buttery, sugary goodness they could handle. It's the least I could do. And give them all a big hug.

Some days are just amazing in the middle of the dust.

Radiation Consult

Today I went to a consult for radiation therapy. This was my third time looking into radiation. First was 7 1/2 yrs ago with my initial diagnosis, then again after my surgery last year and then today. Each time I have a deep gut feeling to run. Radiation scares me. 

This appointment was to decide if adjunct triggered radiation would help shrink the tumors and give me some pain relief. My regular oncologist had said it would be 5 concentrated sessions so that's what I had thought was going to be discussed.

Once the appointment started the 5 treatments were out the window and was replaced with 20 treatments over 6 weeks. Not triggered but a broad base. Doing such a broad based radiation carries a lot of side effects and also effects the regular tissue, not just tumor. As we were discussing all the things involved I hit my wall. The steroids I'm on make me more emotional and so it just was too much and I kind of lost it. I was just overwhelmed. Plus thinking of doing 20 treatments and not 5 was a lot.

We left that appointment emotionally spent and drained. I have the next big decision making appointment weds so we will decide what is next.

Some days just aren't good but there still is good in each day. I hit my emotional wall yes, but my mom and friends were there to let me vent and cry and just be in this crazy ride. I don't know how I got so lucky to have people care so so much and truly love me.

In summary, I'm terrified of radiation and really dislike being on steroids. And I love my family and friends. On to the next day.

Hotel Huntsman, 2 night stay

Wednesday, I went in for my scheduled treatment and went in to get all my labs done before they give you the go ahead to head to infusion. I felt great heading in, just intense nerve pain in my neck. Otherwise just a bit tired. For some reason my port wouldn't give us blood but would flush. I guess this just means the fibers built up like a clot but only blocked one way. This made it so my numbers weren't ready once my doctors appointment started. We talked about things and how the past 3 weeks have been and going forward and then the numbers finally came out. Once they checked my numbers it was obvious something wasn't right and it definitely wasn't right. Turns out my liver was in toxicity. The high/normal that the liver enzymes should be is 40 and 60, mine were 1206 and 1214 (respectively) so I got to be admitted to hotel Huntsman for observation and to get an intense steroid regimen in place and started. They also discontinued all of the meds that had the potential for raising the liver enzymes and one of those is my nerve pain meds. Lets just say I was not happy and the pain started to rise instantly. They did their best to control it but it was finally decided (with a lot of input from me and a doctor friend) that I could have it back. Just missing a day and a half of it really put me behind and I am still catching up. After the first night my numbers began to trend in the right direction, ~700 and ~1100. They needed to keep me to make sure they were continuing to trend down - Which they did and I was home Friday afternoon. Like I said I didn't have any real symptoms or pain from my liver, just from my neck. 

Because I reached toxicity (considered auto-immune hepatitis) I am no longer allowed to continue on this treatment. I said a bad word and my doctor said to not get upset just yet. His explanation was that he just returned from a major oncology conference where the 5 year data points have been released for this treatment. Following people who dropped out for toxicity, etc vs. people who completed the full treatment regimen, it showed the people who reached toxicity lived an extra 10%. Also we are most likely adding radiation to the mix which will accelerate the response in my neck while the drugs are still in my system. There are still options, we will just have to figure out the best one and where to go from here. Not the end of the line. 

I have appointments this week to go over all the next steps and I'll keep you posted on those. For now I am just getting the nerves to calm the crap down and getting used to a very high dose of steroids - hopefully not for long!

Day one - not how I wanted to spend my days!

I was able to leave my room a lot and actually enjoy the view from the floor

New lucky charm

Home was a good goal for the stay!

Dalai Lama

Today was a day to remember - forever.

I had gotten word that the Dalai Lama was going to be in town and also visiting the Huntsman Cancer Institute. I decided to go and see if I could get a glimpse of his holiness. I headed up to get a spot where I heard he will be meeting which was just outside the bistro on the 6th floor. I wasn't sure they would keep allowing people up there so I got there about an hour ahead.

I sat at a table and just did some work and caught up on messages and such. While waiting they had bomb-squad dogs come sniff out the area as well as mirrors to look under tables and such. It is sad we have come to that being a normal thing and not surprising to see.

Once it got close and I got an "the eagle has landed!" Message the secret service allowed us to watch his motorcade pull up and then go back to stand a little ways away.

He came off the elevator and walked right by us, acknowledging everyone standing by, by hands in prayer and a bow. A bow directly at me which was amazing. He then went into his meeting.

Now I know of him and know he is a peaceful, good human but beyond that I didn't and still don't know much. I know now that he is someone that fills every room he is in with pure peace and calm. Silence was not awkward but more a feeling of gratitude to be there. I truly can't describe it.

I then went downstairs to meet my friend and decided to wait for him to come back out.

When he came out this time he walked within inches of me and as he walked towards me we locked eyes for a good 3 seconds. In those three seconds my entire body felt an overwhelming calm and stillness - I froze but not in a starstruck way. He waved his hand in a blessing fashion and continued on. A moment I will never forget.

As he made his way to the car he stopped and greeted a patient on a walk in her wheelchair. He then went to get in the car and realized he had missed a patient and stepped back out to greet him. Heading back to the car again he turned and caught a glimpse of a young girl coming out of radiation. His face lit up like a child but then was saddened to see what she had to endure. He tried to get some info but the language barrier was too much so he motioned to touch his nose. The young girl, who was 9, didn't understand fully so he motioned touching his nose again. Thinking he wanted her to touch his nose she went to place her finger on his nose and secret service wasn't a fan of her attempting to touch him so they explained he wanted to touch noses like a Eskimo kiss per say. She leaned in and he just made a popping noise and giggled. It was adorable! He truly lit up around this sweet girl.

He took one more look around for obvious patients and then got in his town car and headed off. For a moment I wished I looked more like an obvious patient to get one on one time with him but then realized I had my own connection moment and experience with him that was more than many dream of. Like I said, it is hard to explain the feeling he gives just being in his presence.

One funny thing to come from my day with the Dalai Lama is there was a lot of pictures being taken, professional and personal so I ended up in the background of one picture and I think it is hilarious and so fitting for my day of stalking his holiness. I just look like a happy creeper in the background, but I love it.

There are definitely perks in the depths of this disease, you just have to be open to seeing them. This is one of them and a day and feeling I will never forget.

Father's day

Father's day was a good day, mostly.
I started the day out with a quick stop to the Wheeler Farm Farmers Market and had some breakfast. I then ran some errands and did some shopping. After that I went back to where I was dogsitting and played with the pup a bunch (sweet great dane) and then took an amazing and long nap.
After I woke up I got ready and headed to my parents house and we grilled steaks and had corn on the cob, beans and potato salad. All was super tasty and followed up with strawberry shortcake. I gave my dad some framed pictures of me and my sister and then one of my mom, sister and I. He loved them and was genuinely happy and enjoyed his day which made me enjoy it too!

Now the "mostly" part.. So that long amazing nap I took made me sleep through the normal time I take my neck nerve pain meds. I take them 3 times a day and can tell when I need them but was dead asleep so I missed it. I took them as soon as I woke up but knew I'd pay for the 2 hours of lapse. About half way through dinner the pain got pretty intense and obvious to everyone. We tried some anti-inflammatory gel but I feel like it made it a little worse. It got to the point that I finished dessert and headed out so I could lay down and try and figure out something to help. Nothing helped besides time, laying down (kinda) and my next dose.
It is insane to me the pain I've been having in my neck. My tumors are a fraction of the size they were at the worst and are causing almost as much pain. So so crazy. Hoping to begin to manage it better. appointment on Wednesday.

But like I said father's day was a good day, mostly.

Millie's Princess Run

Saturday June 18th was the 5th annual Millie's Princess Run. This run is a special event to me as well.
Millie is my friend Amanda's little girl. She sadly had an aggressive form of leukemia. She beat it once and then when it returned it hit much harder and she failed to respond fully to treatments and sadly lost her fight with cancer June 18th, 2013.
She is such an amazing little girl though. Even through the tough days she found a smile and tried to spread joy. She would draw other patients pictures, sing, dance, design fashion and do silly antics all the time. Oh and she LOVED Justin Beiber. Justin actually came and saw her at the hospital the night of his concert since she was too sick to go. Because of this and how her mom says that day was, I will always be a Beleiber!
This run began as a way to help the Flamm family early on in they cancer fight and then evolved into an annual event and the forming of Millie's Princess Foundation that does all it can year round to help local kids fight cancer. Each annual run they select a prince and princess to be the recipient of the funds and they do all they can to raise as much money for these families as they can. It's amazing to see the community give what they can to help.
In summary it is an awesome foundation and an amazing event. There is a 5k and then a kids fun run 1k. This year they had tons of fun things for the kids, food trucks, a fun dj getting ppl to dance and then some zumba. Also a great silent auction that I won two great things for a steal! Oh and I haven't mentioned the princesses! Every princess was there - like every single one. Plus star wars, princes, action figures. The works. Such a fun way to spend a morning. Hope to see all of you there next year!!

Rally for Ruby and Millies Princess Run

Rally for Ruby was great! So many happy smiling faces - especially Miss Ruby's. She was a bit overwhelmed but warmed up for a minute which was sweet.
The auction went great and pretty much everything got bid on - anything that didn't is going to Millies Princess Run this Saturday. The bike parade was led by Ruby and she was so excited. I signed up for the fun run, but my energy wasn't at the level to walk it.

I've been feeling pretty good - my fatigue is pretty intense lately, so it is nice that I don't really have any commitments and can rest when I need to. I have been doing more each day so that may be part of it too. My neck is killing still which is terrible. I have started taking nerve meds again and we are talking some adjunct therapies to try and reduce the pain. More info on that to come as nothing is really set in stone.

This Saturday is another event near and dear to my heart - Millies Princess Run! Millie is my friends daughter who fought like a champion against leukemia. Sadly she lost that battle 3 years ago (Saturday is the anniversary of her passing). This run was started for her 5 years ago and has grown into something amazing. Each year they help other kids with cancer, usually having a princess and prince. Runners dress up in tutus and crowns, other costumes, glitter and sparkles everywhere! Every princess you can think of is there and it is just a good time. It is nice to show up for people who need it - especially after being on the receiving end. Again, I'm registered for the run but will maybe walk a portion of it. Still working up the strength of things... One day. It will be nice to honor Millie. She has helped me in so so many ways through my cancer fight. When I get overwhelmed or start drifting to freak out mode I think about how if Millie could do it, so can I. She was such a strong and positive little human. I hate cancer, especially childhood cancer. So evil. That's why this event is so great - it makes you not think about the horrible side of things and have a fun day surrounded by princesses and men in tutus! Can't wait.

My next treatment is Wednesday, half way through the hard ones. Will be happy to get these behind me. Scans aren't until July 22nd, so just over a month away.

This picture makes me so happy - Sweet Ruby with her face paint

Can't sleep...

It is 1:53 am and I can't sleep. Some of it is that I can't get comfortable with my dang neck nerves firing like crazy but most of it is thinking about random things. The main thing I keep thinking about is the Rally for Ruby in the morning. And just Ruby and her family in general. I just keep thinking how can she possibly have the same thing as me. How is it that she is so full of life yet inside her little body is a beast attacking. It just doesn't seem real, especially since she doesn't show any signs of being sick - even with treatment she hasn't had any side effects. She is truly a fighter and doesn't deserve the things she is forced to deal with. Me, I'm 33 and can understand what cards I've been dealt. I can understand, even though I'd rather not, the scary reality of what this diagnosis carries. I know the statistics. I don't want the statistics to apply to sweet innocent 3 year old Ruby. I don't want her to have to understand all of this. I want her to miraculously beat this f'r and grow up to be a sassy teenager that will give her sweet amazing parents a run for their money. I want so many things for this amazing girl. So so many things.

Back to the Rally. . . I know how much it meant to me to see my family, friends and community come together to support me time and time again and I just want that same feeling to go to the Thackeray family. I want tomorrow to be something that they remember forever as one of the many positive things to come out of an extremely negative situation. I want the memory of this day to pop in their head and bring tears of joy to their eyes like the thought of my birthday fundraiser party does. The thought of "is this real life?" Or "all of this for me/us?!." These are the memories that get me through rough patches and I just want this amazing family to have the same thing.

I know tomorrow will be incredible and full of love and support - as well as making a good amount of money. I've done my best to rally donations and do my small part to make it a better and hopefully more successful day. I know I'm not the only one rallying. There are close to 300 silent auction items - that speaks volumes.

I can't wait to basically have a mini high school reunion tomorrow and feel the love and support that will be in the air. I can't wait to hug Ali, just not to long of a hug cause we know what happens then. Tears. I'll take a short hug over no hug :)

Now to try and fall asleep. Hopefully writing this out will clear some space in my brain and allow me to get some sleep.

Good night #teamLex and #teamThack

Gofundme.com/rallyruby
Facebook.com/rallyruby
Thacksmack.blogspot.com

Things are pretty good

I am happy to report that since treatment a week ago I have had little to no side effects - pretty crazy and a complete difference from round one. The worst thing happening is that my neck is extremely sensitive and sore. The tumors are larger, red and warm. It is almost like they are aggravated. They are pushing on tons of nerves so I get lightning bolts of pain when you least expect it. It is very unpleasant and painful so I have started back on my nerve medication which is starting to help out a good amount.

I was so excited that I felt so good so soon after treatment because the Sunday after was two of my most favorite events - Gay Pride and the opening day of the Wheeler Farm Farmers Market. I rested everyday up until Sunday so I would have the energy to go to both. It was a full day! I had a great time though and was worth how tired I was at night. Since then I have been pretty active and even worked two days this week. Doesn't sound like much but it truly is. Hoping it continues.

One thing lately is that I am in a sort of mental funk. My mind just wonders to the dark side of things and then I have to reel it back in and to the moment. It is part of having cancer - your mind wanders and goes down the list of "what if," and it is terrible. I am working on getting out of the funk and not stay in it, it will just take time.

In the middle of all the fun my dad had back surgery. He had 4 discs repaired since they had herniated. His surgery went really well and he was discharged practically immediately. Hoping his recovery goes smoothly and no re-injury happens. No bending, twisting, lifting. Getting in and out of bed log-roll style. It's a lot. Backs are tricky... I know too well!

An update on little Ruby who is 3 and fighting stage 4 melanoma and on Nivolamab (one of the drugs I am on) - she had her scans this week. Her little body has 40 tumors and sadly they are growing, which means the treatment is not working and so they have to look at other options, which there is slim to none of. There are some clinical trials they can apply for but that is a process and may not happen in time. It truly makes my heart sink, and makes me think the worst for myself as well (I'm really trying not to go there) Her fundraiser is this weekend and I have been helping get silent auction items and was impressed that I got 30+ donations! I truly have amazing people around me and an amazing farmers market family. The rally will be amazing! If you want to donate you can go to facebook.com/rallyruby to donate to the rally or their gofundme - https://www.gofundme.com/RallyRuby - anything will help! I'm so excited to go support this sweet girl and her amazing family. Really hoping we both can beat this beast melanoma!

As always, thank you for all the love and kindness you've shown to me - especially those sweet people who have sent me letters! I was so amazed that almost half have been from people I don't know but just follow my journey. Truly incredible. Thank you. Thank you. Thank you.

Almost all the donations, amazing. 

My Pride buddy for almost a decade!

Big Chair Photo - a tradition! 

Dallin and Davis

The Parade

#melanomajustgotpersonal

                                      

#Melanomajustgotpersonal I've marked my opponent! Braf+ andvanced Melanoma.

My #melanoma story:

First diagnosed at age 26 with stage 3b from mole on left forehead/hairline with satellite lesions on 2/10/2009

Clear for 6 years and an enlarged lymph node appeared on an MRI which tested positive for#metastaticmelanoma #stage3c on 1/14/2015. Since then I have had a radical neck lymph node dissection surgery, three brutal rounds of inpatient#biochemo, clinical trial of HF10 (herpes simplex 1) injections paired with 4 #Yervoy (#Ipilimumab) infusions, Braf inhibitors #Tafinlar/#Mekinist combo, Braf inhibitors #Zelboraf/#Cotellic combo and now on immunotherapy combo Yervoy (Ipilimumab) and#Opdivo (#Nivolumab). As I stand now I have one more approved treatment option left. 

Melanoma is personal and isn't JUST skin cancer. 

I have an amazing army of supporters and#teamLex is strong which helps me keep fighting each day. 

#melafuckinoma

#melanomaawareness

Treatment Day 2

Day two of the combo treatment is done and in the books. It is now two days after and I still am feeling good. I am pretty tired and have constant nausea but not as bad as with the first treatment. I am laying low and resting mostly, to give my body the best chance of not freaking out. I do not want a repeat of last time! My goal is to be able to go to the opening day of the farmers market this Sunday as well as attend some of the Utah Pride Festival - as per tradition. It will be a full day but both of those things have great importance to me and I will be sad to miss out. Again, hoping my body cooperates.

I also had a formal ultrasound done of my gallbladder - named Gally fyi - and it was confirmed that I do have numerous stones. There is no infection or thickening so there isn't an immediate need to remove it. We (my oncologist team and I) have decided to not do anything with it until it spazzes out again - which hopefully isn't anytime soon. For now Gally is here to stay.

This week I attended a funeral for John Williams, the owner of the company I work for, Market Street. I worked for him for over 7 years and worked 7 of his legendary Christmas parties. He was one incredible, generous and fun man. The funeral was very positive and it was great to hear all of his accomplishments and to hear that he spoiled his family so so much. Pretty amazing to see. Makes you want to give all you've got to those you love.

I want to thank those that have sent and dropped off letters - you truly amaze me! I have received a good amount and it makes me feel so so loved! Thank you, thank you, THANK YOU!

Now keep positive thoughts that I continue to feel good going forward towards the next treatment!

xoxoxo