My Brief Interview on Fox and Friends

Here is the link to when I was interviewed by Abby and Jon Huntsman for Fox and Friends


A Look Inside the Huntsman Cancer Institute

LaterBlog: Huntsman

Huntsman Cancer Hospital and Institute is basically like a second home to me; whether I like it or not. For the last 8 1/2 years I have gone up there for all of my cancer care. Numerous scans, tests, appointments, laughs, tears, hugs, food, overnight stays, losing friends and loved ones, infusions, fluids, treatments. All of the things. 

When I started going there they had just opened phase 3 of their plan of the institute. This past week they finished and dedicated phase 4; Primary Children's and Families Cancer Research Center. It is an entire wing fully dedicated to research of children's cancers and genetic cancers, hoping to finally find the one find that will eradicate even one type of cancer. Genealogy will be put to work and I truly hope that they find the end to this horrible thing I have fought and lived with and watch so many fight. 

I was asked to be one of the guest patients to attend the dedication event. I was honored. We all were given flowers and talked to the media and had reserved seating for the event. The Mormon Tabernacle Choir performed and many very respectable people spoke; including Jon Huntsman Sr. himself. It was a great event. It also happened to be his 80th birthday so there was some celebrating happening as well. 

I happened to have my treatment that day as well. When the staff found out about that they decided that they would do my media interview during my treatment. Little did I know that Jon Huntsman Sr. himself would be coming to my infusion. He walked in and I was almost a bit starstruck. To put it into perspective, it is this man that I owe the comfort of my life right now. It is because of his vision and extreme financial donation and dedication that Huntsman is in my backyard - a nationally recognized cancer center. He has made it so I haven't had to travel hours for treatment and care. He has made it possible for the doctors and researchers to further advance in finding the cure for this disease.

He came towards my infusion pod and I stood quickly to give him a hug - only to have him say it wasn't necessary, but it was. We chatted just about my cancer and my treatments. He noted that he could tell my attitude was positive in the face of such negative circumstances. His granddaughter was with him and she is a news anchor for Fox and Friends and she noted that when she walked in the first thing she saw was my smile. Which made me happy. I thanked him for everything and told him my dad thanks him as well. 

It was all filmed but I haven't seen anything else from the day be published. I will post whenever they do as I am assuming they will be airing it soon. Infusion went as planned and I went home and rested. It was a big and good day. 

This dragonfly just was hangin out for about 5min during the dedication; representing all the people who couldn't be there in person since cancer stole their time

San Diego to Scanxiety overnight...

I had an incredible time on my vacation to San Diego. We packed the days with the Safari Park, Sea World and lots of good food. The most fun of it all was all the good times talked about and made. Knowing someone for 30 years means you've had a lot of fun times and have known a lot of people down the road. It was fun to reminisce for sure!
The first full day we went to lunch by the sea in La Jolla, it was gorgeous and tasty. We then headed to the Safari Park. Between the beach and the inland we gained 20 degrees in heat - landing at 94degrees. No fun on that front. Besides the heat - the park was great! We saw all sorts of cool animals, cheetah run a sprint and then the coolest thing on the safari part - a baby antelope was born seconds before we got there. Umbilical cord and everything, standing for the first time. So cool. Ashley came up from Orange County to meet up and spend the night with us. We grabbed a nice dinner on a patio overlooking the ocean in Del Mar and watched the sunset. That night we talked til 2 am giggling and then zonked.

30 Years of Friendship Here

 

Sun Hat Hazard... Sorry Jackie

Brand new baby, just standing for the first time. Umbilical cord and all. Fighting males (3) behind them

THE best local strawberries from a road side stand... delicious!

Our Dinner View

The next morning Ash and I woke up early and had coffee by the pool and chatted, nice and relaxing morning (sadly I slept terribly that night!) We then went and met my friend Morgan's family who live in San Diego for a champagne brunch. It was a great little brewery with a fun brunch. They had an amazing koi pond and live music. Ash joined us for that and then headed back up to Orange County.
Sunday afternoon we spent it at Sea World seeing the remaining shows and animals. That night we were exhausted! We came back to the hotel and relaxed for a bit, went to the hot tub. Morgans family came to the hotel and joined us for a late dinner and some drinks.

 Besties at the Pool

5yr old at heart... they won me a stuffed animal and a coin purse WHILE taking me to Sea World. Happiness.

Koi pond at Karl Strauss Brewery for brunch

The next day we checked out of the hotel and Morgan had to do some work so Jackie and I and Morgans sister returned to Sea World. We took in all that we missed, including a rollercoaster and water ride; both that I haven't done in years and felt like an old lady after once we were all disoriented from being jerked all over! (both the Safari Park and Sea World have short hours... 10-5/7pm) We then hit the beach for a bit and grabbed some Mexican food for the road and headed to the airport. And just like that the exciting weekend was over! It was a lot of fun, but I am still recouping! So tired still!

Toes in the sand and the Pacific = Reset

Adventures of the Sun Hat continue... 

Avalon, me and Jackie doing some amazing selfies

I had Tuesday to recoup and then Wednesday I had an appointment, Thursday I had scans and another appointment. To summarize what I learned from those appointments and scans so far. Not really much. Basically everything hangs on what the scans reveal. We did block out the surgery date if we go forward with surgery to remove the neck tumors. That date is June 8. So approximately 12 days away.. oy. It is a much easier surgery than I have had, but it is still a surgery and will be followed by radiation to the neck. Some clinical trials were brought up as well, both are paired with Keytruda (pembrolizumab) but both (and radiation) involved a wash out of the meds I'm on. I would be off of all systemic treatment for a minimum of 28 days and that scares me, worries me. I don't trust what my body will do with a month to run wild. So that said, I have had some intense anxiety happening lately. I am doing my best to control it but it is definitely wearing on me. One thing I have started to notice is pain in my hips again. This makes me think that the cancer is slowly starting to grow there again. Definitely don't like the physical reminder that it is inside. I have an appointment on Tuesday with my general oncologist so I hope to finally get a better idea of what is happening and get a plan. Once I have a plan that should help ease my anxiety a bit.

The. Worst.

This weekend is Memorial weekend here and so I am hoping to do a little BBQ'n and hanging out. Try and keep reminding myself that there isn't anything more I can be doing at this very moment to change where I am at. Just got to be in the moment and enjoy what I can right now.

My friend is real fast!

I got to go and see my speedy friend be rewarding for being the fastest stair climber for the day and for the record.

It was for the OutClimb Cancer Challenge - a fundraiser for Huntsman Cancer Institute. He's a competitive guy and he was in it to win it and he did! The challenge was to run up 24 flights of stairs. He completed that in 3:03. THREE MINUTES! Isn't that insane? That's 7.62 seconds per flight. I'm super impressed to say the least.

There was also a record beat for times up the the stairs and it was 52  times for men and 50 for women. Pure madness and I can't imagine how sore their thighs and calves are still..

Booster!

I decided to launch a booster tshirt campaign to help me relieve the financial burdens of life during treatment as well as bring some awareness to Melanoma.

To support me on this - and to get a cool #melafreakinoma shirt, go to booster.com/melafreakinoma and see what shirt you like best!

Thank you for all your support!

A preview of the shirts

Surgery

It has now been 4 days since surgery and I am attempting to type on my computer - so far so good but can tell it will be short lived.

With me for 4 major inpatient stays 

Right before surgery I had to have a quick CT scan so there was a bit of a shuffle which helped keep my mind off of things. I definitely was emotional though. My friends sent me some great things to keep me distracted though - pictures of puppies, videos of my favorite little guys and then of course Justin Timberlake. Before I knew it I was out, didn't even get to the counting down part! 

When I woke up I had this insane pain - in the heel of my foot! Like crazy pain, enough that I was kicking and screaming. Yes, screaming. I was relieved at that moment that I hadn't lost my ability to talk. But man my foot killed. It was most likely propped up at a weird angle for the 5 1/2 hr surgery and then once it moved and got blood flow it freaked out. Me screaming also meant that I was able to swallow as well. I then smiled and most of the smile works, just a bit of my lower lip is stunned and should hopefully come back. This happened with my last surgery and it took about 2 months to come back. Knowing that it will most likely come back makes it easier to accept.

Before surgery to compare

Before surgery to compare

WARNING - SCAR PICTURES BELOW!

Surgery went really really good. Dr. Monroe said he believes he got every tumor out as well as any affected lymph nodes. He dissected the old scar as well and was able to keep the new scar minimal. I made him take a picture of the tumors and show me them when I was awake - pretty insane. He was emailing them to me but somehow that got messed up. I hope to get them tomorrow to post. It was pretty interesting as some of the lymph nodes and tumors are black while the others were not. That's the melanoma in them. The scar is larger but the sutures/stitches are tighter so I am thinking it will heal even better than my last one. I have a drain that is working pretty well, having some minor issues with it but nothing too big.

Day One - right after surgery

Day One - right after surgery

Day Two - still in the hospital

I was in the hospital for 2 nights and now have been home for 2 nights. My oxygen level tends to drop when I sleep while on pain meds so we decided I should have supplemental oxygen at home for when I am asleep. It isn't too bad, I just hope it isn't a permanent thing.

Day Three - At home after a shower

Day Three - at home, after a shower

The pain isn't too intense - it is there for sure, but not what I had expected. There is a lot of surface skin nerve damage so I am not sure I am truly feeling all the pain that I am actually having, which is one benefit to nerve damage. I have been keeping up on a schedule for my pain meds and things haven't been too rough. I have some limited range of motion but I feel a lot of that is swelling and we can work on it to improve it. Swelling has been the worst the last two days so I have been trying to drink as much water as I can and move as much as my energy will allow - which hasn't been much. I have been sleeping a ton. I know you heal when you sleep so that makes sense, but man I'm exhausted.

This came in handy for my new diet! Just no chocolate dipped ones for me this time

They had to cut one of the bile ducts in that area that regulates fat in your blood stream so because of that I am on a NO fat diet. Like zero fat, nada. Not so easy to do when you can't chew much since most of the fat free (natural) things are vegetables. We are finding recipes and tricks though and for now the nonfat yogurt, cereal, milk and fruits have done ok. Basically on a dairy diet. Like I said, we are working on it.

And this note made me chuckle

And that is about all I can handle of holding up my arm to type, but I feel like I did a pretty good job! 

Cramming in the fun

It's been a good week. After the emotional roller coaster of a day last week, I started to move forward and continue on with things. I cancelled all I needed to cancel for the upcoming weeks and booked a trip to California to see my best friend and ocean. One of my close friends got married and we had a great time at the celebration. It was held at the Leonardo which used to be the old library. My grandpa was the commissioner when it was built so there is a plaque with his name on it. I always think it is cool to see. The Leo has an exhibit called "Flight" right now so there is literally an old airplane inside. It is pretty amazing. There are also all sorts of flying things too - hard to explain. It was really great to see all the developments in flying that I take for granted! 

   

I also saw my friend run up a ski jump. Yep, ski jump. It is the Red Bull 400. You gain 500ft in elevation in 400 meters. It is insane! And of course he is amazing at incline running so he placed first in his division and second overall by just milliseconds. I just watch in awe as all the heats continued on. They are crazy but good on 'em! 

I have been working a bit this week too. Trying to get some money before being laid up for a bit. It feels good to have some purpose in the day. Sometimes not. ;)

Mumford and Sons were in town this week and I have been looking forward to this show for a long time. Things didn't go as planned and I sat in my car and listened to the concert, I know that sounds super depressing and sad but it was actually nice! I've been laughing about it all week. It made it so I could listen to the first presidential debates as well as the concert AND I didn't get stuck in the traffic after the concert was over. In and out! Ahh, my life is a bit special. 

Tonight I am headed to a gala for cancer with Huntsman Cancer Institute. It is the annual "Take a night off of cancer" party so they have some inspirational speakers and dinner before the party. I am lucky enough to get to be a part of the gala because of my good friend who works for Huntsman. It is always fun to get dressed up and go out and about. I'll update this when I get some pictures from it. 

Surgery is now under two weeks away although it feels like it is coming up faster than that. Although I have kept myself busy, the worry of what life will be like after the surgery still creeps in. I have joked about things being referred to as BC (before cancer) and AC (meaning after I found out I had cancer) but now I need to figure out what to say in regards to this milestone. AS(s) haha. I think I'm really funny by the way... 

I am trying my best to be in the moment and not worry about what is to come. Easier said than done, but working on it. 

I have a lot of things jammed into the next two weeks, especially a lot of eating since that will likely be limited after surgery and with radiation. Enjoying what I can now! Oh and I have an MRI tomorrow to see how my brain tumor is doing. Really hoping that it is smaller. I haven't had as many headaches. Have been having a good amount of nerve pain though... let's hope that surgery takes care of most of that! 

Off to the gala I go...

Miles for Melanoma - Salt Lake, September 10th! Join my team!

I am heading a team for the second annual Miles for Melanoma walk on September 10th at Wheeler Farm! I am excited to be part of this for a second year and to help this walk grow and get more attention. Last year was the first one and it was a pretty sad turn out.

My team name is #melafreakinoma, I figured they probably wouldn't like my signature hashtag so I toned it down just a hair.

If you feel like attending then you can join my team by going to the Miles for Melanoma page and joining my team. If you just want to fund-raise for me that would be great too! Last year I was the fastest fundraiser - raising over $400 in only a couple days! I have almost reached my team goal of $1000 which is great! Our team is currently #2 for the top fundraisers, I think we can beat the other team - but time will tell.

Thanks for all your help! I am working on getting some t-shirts made up too possibly, I just don't know if they would be done in time.

http://join.melanoma.org/site/TR/5kRunWalk/MilesforMelanoma?team_id=3047&pg=team&fr_id=1270

Insurance Denial

I got a letter from my insurance informing me that they have denied my brain radiation. So frustrating. The reasoning doesn't make any sense to me either. The reason is this:

"The request for stereotactic radiotherapy does not meet SelectHealth's Stereotactic Radiotherapy Medical Policy criteria. The information we received indicates that there has been progression of the cancer outside the cranium. Therefore, the request for stereotactic radiotherapy has been denied."

So basically it is saying that since it has spread elsewhere (my lungs) that they wont cover it. Now keep in mind that radiation or surgery are really the only options for treating anything in the brain.

The reason for this is the blood-brain barrier, your bodies own defense mechanism to prevent harmful chemicals and such from reaching the brain like chemo and such. Surgery isn't an option because of it's size (too small thankfully!) so this is truly the only option for treatment.

My doctors haven't said it is final and that they will continue to fight the denial and hopefully reword it in a way that things will be approved. Regardless I will be getting the treatment, we will just have to work it out and pay for it out of pocket. Insurance is messing with the wrong army and the wrong fighter for sure - I think they just think people will just be ok with these decisions and not do the treatments. Nope, not here.

We will figure it out. I'll keep you all posted!

Liver Biopsy Today

Today is when I get my liver biopsy - and I'm not looking forward to it in the slightest.

I am hoping it is going to be fast and that I will have some sedatives.. I know they don't put you out but I don't respond to the conscious sedation well so we shall see.

This biopsy will help determine what is going on with my liver and hopefully give us some answers as to why it continues to stay elevated as well as why it isn't tolerating any drug/treatment we have been trying. The doctors said that it is acting as if I have autoimmune hepatitis but that I am not testing positive for it, so hopefully a closer look at the cells and such will give a better idea of what is happening.

After they look at the biopsy they will decide if I should go on a liver med or just continue the steroids. Ideally I will come off the steroids and the liver med will regulate my liver enough that I can start a new treatment and continue fighting the cancer. As of right now I am not on any treatment and can not start a new one if I am on steroids. We really need my liver to start shaping up!

As of three days ago my liver numbers were trending down but still high, about 8-9x the normal. They will check them again today I believe and we should see what they are doing.

Here's hoping it is a fast biopsy!


***Update***
Biopsy went well. It wasn't nearly as bad as I had anticipated which was a huge relief. They gave me mild sedation, which actually worked, so I wasn't too anxious as it was happening. The pain wasn't bad either. I think the hardest part was having to lay on my stomach for 3 hours after the biopsy to help stop bleeding.

Also I wanted to make sure everyone knows that they are not doing this biopsy to look for cancer - they are looking for reasons why the liver is freaking out when I am on treatments.

We should have the results by Monday

Broke out of Hotel Huntsman!

Hotel Huntsman (Huntsman Cancer Hospital) although very nice, is not where I want to spend my time. After one night there I broke out and was able to head home. 

Liver levels stayed the same overnight basically so no new spikes which is good. Met with the liver team and we are going to try and figure out what is happening with my liver and why it is reacting so drastically to all the cancer meds we use. Instead of throwing steroids at it forever we are looking into a drug that treats auto-immune hepatitis (that is how my liver is acting although it isn't testing positive for it) This would be a long term drug and have far less side effects than long term use of steroids. 

We will be doing a liver biopsy the beginning of next week sometime to get a better idea of what is happening on a cellular level so we can approach it the best way. How they do a liver biopsy I have no idea. Let me just say I hope I get put out 100% for it, none of this conscious sedation crap! I should know more by the end of today. 

I will also be going in tomorrow and getting my liver levels checked.

I have been pulled from my BRaf inhibitors/treatment for now. Couple reasons - one, I have to be off of them for at least 7 days before doing my brain radiation and two, my liver is obviously not happy about it. I am not looking forward to my tumors sprouting back up and it makes me nervous that I will most likely see some side effects from my lung tumors. I truly hope not. 

While in the hospital I did a crazy treatment to prevent pneumonia as well as some other viral infection that people on prolonged steroids tend to get. I had to sit in a plastic shell and breath some crazy stuff and blow it out into a filter. It was strange to say the least, but if it helps me avoid a separate sickness I am in. 

Cause this is the closest thing to smoking I have ever gotten.. ha. 

Also, thank you SkullCandy for donating a ton of headphones to the hospital! What a bonus to get while staying there. Can't wait to try them out! 

it's fo freeeeee

Stage IV

What I have fought so hard for 7.5 years to avoid is now a reality – I am stage IV. 

I had scans early last month and the results weren’t good. The cancer has spread past my neck. I have a small tumor (4mm) in my brain and around 10 even smaller ones in my lungs.

Right now we are going to put our focus on the brain lesion and treat that with a one-time blast of radiation called stereotactic radiosurgery (SRS). This won’t happen for another week, most likely two, and I shouldn’t have too bad of side effects from it – fatigue mostly it looks like. The lung lesions are most likely undetectable now with the treatment I am on, but we won’t know for sure until the next scans which will be in another 4-6 weeks.

I also had an appointment today to go over the next steps (radiation, treatments, etc.) and to check my liver. Well, sadly my liver has spiked again and I am admitted to Huntsman once again for observation. For some reason my liver is not tolerating any treatment I am on so they are bringing on the hematology/liver team to hopefully figure it all out. For now, we have just thrown a lot of steroids at the liver and it worked for the most part but isn’t a long term solution (and my sanity and puffy cheeks need a break from them!) and we need to have my liver tolerate the cancer drugs. I feel so silly being in the hospital when I feel just fine but they are worried that the liver levels are going to continue to increase over the next 24 hours so they need to have me under observation (and some more steroids for the time being.) I will be here for at least a day they are thinking.

I have NO symptoms or side effects from either. No pain, no issues. I wouldn’t know they were there unless I had scans. 

I have known since July 17th, so I have been sitting in the information and just processing things. I didn't want to post anything until I knew more details and I also wanted to enjoy the things I had already planned without being the center of attention and focus. I also didn't want it to be real, and once it is posted, it definitely is real. Thank you for understanding why I held on to the news for as long as I have.

This news isn't fun for anyone. It is the type of news that makes your best friend get in her car the next day and drive from California to see you and be here for you. It is news that you try and wrap your head around and realize that really will never happen. 

What I do know is that this news wont stop me from living my life and carrying on. I wont put things on hold because of this change, I will keep on keeping on. Making plans as I can. Obviously priorities will change and re-position, but in a good way. Probably how they always should have been, Basically everything changes while nothing changes. 

Craig Sager

This was a Facebook post and thought it needed to be shared here too... 

You know, cancer is hard. After a day full of ups and downs and a steroid induced meltdown the last thing I wanted was to hear the word cancer. But as I turned the channel it went to the ESPYS and right to them honoring Craig Sager - someone I didn't know of. Lets just say his video and speech reminded me of what this battle is about and how I want to approach it. One day at a time, and one goal at a time. If you have the time to watch the full presentation, do. If only the speech then that is enough. You don't have to have cancer to live life like he is. Take everyday for what it has to offer, and start over the next day. That's what I am trying to do. Again, one day at a time. ‪#‎melafuckinoma‬ ‪#‎melanoma‬ ‪#‎melanomaawareness‬

http://www.huffingtonpost.com/entry/craig-sager-cancer-espys_us_57869afae4b03fc3ee4f12f2

MEDS

So I have been asked how many meds I take a day... Well with the new meds it is a lot as it adds 9 pills a day. I decided to show you exactly what I take.

Here are my AM meds.

They are as follows: 

Zelboraf (3) - BRaf Inhibitor/Chemo Drug

Ibuprofen 800mg - Pain

Gabbapentin (2, 600mg) - Never Pain

Personal Pill

Allergy Pill

Thyroid Pill - Caused from the immunotherapy

Prednisone (4) - Currently on 80mg down from 120mg

Stomach Coat Pill - Due to the Prednisone dose, to protect my stomach

Pain Pills (1 1/2) - These vary per day, and multiple times a day

NOT PICTURED: Mid day meds: Gabbapentin (2, 600mg) and another Ibuprofen 800mg. If pain is climbing I will take additional pain meds too although I try not to

PM Meds: 

Zelboraf (3) - BRaf Inhibitor/Chemo Drug

Gabbapentin (2, 600mg) - Nerve Pain

Pain Pill (1 1/2)

Cottellic (3) - BRaf Inhibitor/Chemo Drug

Personal Pill

Sleeping Pill

Probiotic

So, lots of pills. Since my liver situation is still so high, all but my nerve meds all process through my kidneys. For now I can't take anything else that will process through my liver such as Tylenol so I have to be careful. Before the liver situation I had two additional meds I took as well... so many meds! The life of a cancer patient is what I say. As the pain decreases with the BRaf inhibitors I will be able to reduce the pain pills, ibuprofen and nerve meds. I'd like to get down to as little amount of prescriptions as possible but that will take some time, but that is always the goal. Lets just say they know me at the pharmacy. 

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!

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!