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!!