Ready, Set, Treatment type #15

Man I am a slacker in updating lately, guess that just means I'be been busy doing other things, good and bad. Here's what's been going on...

Scan results and such...
I had my appointment with my general oncologist to go over the scans and decide what we are doing next. As far as scan results go - relatively stable. There are some lung mets/lesions that are larger but most are the same or smaller. Liver, spleen and bones are all stable, if not improving. Front of my neck is obviously larger. My brain tumors are both smaller and there aren't any new tumors which is great.
Now treatment options...
It may seem that if things are stable, for the most part, then why not continue on what I'm on? Well because it isn't working on everything, it isn't safe to stay on the same treatment. We talked about the options in front of me and we decided to NOT do surgery right now and to restart Keytruda (Pembrolizumab) to see if that will take care of everything. Radiation isn't ideal, surgery just takes care of the problem temporarily, and I sadly do not qualify for many trials due to my past issues with my liver from treatments. We also talked about adding TVEC (a version of the herpes simplex virus) injections into my tumor on my neck. They knew my insurance would deny the injections, so we are applying for drug assistance. Keytruda is a good enough attack, but adding TVEC would just be that much better. I stopped the BRaf inhibitors and started Keytruda yesterday. Feel pretty good, just tired but that could be from having a fun weekend.

Treatment #15, Day one

Now to tell you about the fun parts of the past week. Last Thursday I knocked off one of the items on my bucket list - to speak to younger kids about my journey and sun safety in general. My friend teaches 7th graders and let me talk to the kids. I'm not going to lie, my goal was to scare them a bit so they stay away from tanning beds as well as lather up on sunscreen this summer. It went well - even when the power was out for almost the whole day. Not so fun when a lot of your presentation is based on pictures and videos and such! I did well talking for the entire class and we made them check their skin for moles and to just get familiar with their spots so they will know if they change. I also had them give me some more ideas for my bucket list. Man I got some good suggestions! Lets just say skydiving is the most suggested; not so sure on completing that!

Eat Eggs and Waffles. My type of bucket list item

This past weekend was my favorite time of year - Pride Weekend. Gay pride has been something I have gone to for 11 years now and love every minute of it. I am proud to be a gay ally and it makes me happy to see the support grow each year. This year we did the festival on Saturday and then the parade and a BBQ on Sunday. The parade is always fun, but man it was so hot this year! I started not feeling so great so I took a break inside a bar to cool down and get some more water in me. Heat just takes it out of me. After the parade we BBQ'd and relaxed for the day. Happy I was able to make it there one more year!

I decided to make a sign this year. Sadly it is the truth. No takers lol

This weekend I am headed to Portland! It is a last minute trip but it is shaping up to be a fun time. Tyler and Spencer were already going, Megg was going for work at the same time. I had a flight voucher. It all just lined up too well! Brooke made it work to go as well so I am excited for a fun adventure in the Pacific North West. I have never been so it will be fun to go somewhere new. Pictures to follow!

Added to the stack today... Eff You See Kay. 

Went on a little stroll in the mountains after brunch with a friend

Went to a Paint Mixer and painted my pups (well my parents and sisters pups)

My friends new company, Villmark. She chose me to model one of her neck warmers - check them out!

Catching a cold

Yep, I caught a cold. Doesn't seem like much but when your body is compromised it takes a bit of a toll. Because of my liver issues in the past they wouldn't let me have any cold meds so I just lingered through the first week of it. And to my delight my liver has been normal for the two weeks after treatment so I got cleared to take meds. Here's hoping that they help and get this sucker gone!

But yep you read that right, my liver is behaving which is awesome! I'm 2 1/2 weeks out from my first treatment so that is good that it isn't hitting me. With the cold I don't know whether or not I have side effects so we will see with this next dose which is on the 28th.

My hair has definitely started to sprout which is great news for me. I am excited to have it come back in and not wear a hat or scarf everyday. I'm thinking a few weeks.

I've been pretty mellow and not been doing much so there isn't much to report, besides sleeping a lot and lounging. Hoping this cold gets moving and I can start doing more with my days.

Feb 12

Feb 19

I know it doesn't look like much but it is starting to come in!

8 Years

8 years ago I was told I had melanoma. It is amazing to me that it has been this long and this hard. Although there was about 6 years of calm, the last two years have definitely made up for it.

I got the call about my most recent biopsy (which wasn't a fun biopsy to say the least, don't know if they will ever get easier) yesterday and it is in fact melanoma. I had really had my mind set on it being scar tissue or something of that sort, but no. The most frustrating part is that the area is the dead center of where the radiation hit the hardest. That means that even with that much of an attack, those cells are that big of assholes that they are there still and growing. This doesn’t change my treatment plan, I will continue on Keytruda. What it does do is open up the option for a couple more clinical trials if my brain lesion stabilizes. This last week has been the first I have noticed headaches coming from the area of the tumors which scares me. It has subsided but it definitely was there.

Lately I have been a bit down about things. I think just because it’s been a long 4 months of fighting hard. And to find out that even with the hard treatments the cancer is still growing is a lot. I also don’t really have anything else going on besides my cancer fight so that frustrates me too because I usually am such a busy body. Right now I am just in a waiting game to see if I will be having any side effects from my treatment and can’t really make plans for too much until I know what that will be. When you feel that your time is limited (and it could be years and years, but still limited) all you want to do is anything but wait. I hate getting down about things that I can’t control, like the cancer spreading and such, but I just can’t help it these last few weeks. I am trying to work on it though.

This is when I have to work on things one day at a time, moment by moment. Hoping things mentally turn around soon. 

My fingertip is on top of or pointing directly to where the new tumor is. It is extremely small so I can't feel it at all, I just know from where the biopsy entry points

Hello, 2017

Goodbye crazy 2016 and hello 2017, may you treat us well!

Usually on New Years I like to look back at the year at all the good that has happened and lately so much craziness has been going on in the world that it is hard to look through that fog and see the good in the dark. That said, I still know there was so many good things to be happy about for 2016 as there was to be upset about.

My year was once again consumed with being cancer Alexis, not how I'd like to always be, but sometimes you need to commit yourself fully to something to get rid of it. I know I am not rid of my cancer, and it in fact is worse than it was last year, but I know I have given it all I have and don't plan on quitting anytime soon. I have done 8 different treatment options in 2016 alone, including surgery, brain radiation, neck radiation and BRaf inhibitors multiple times. I have been hospitalized for drug induced hepatitis (liver issues) three times, went to the ER three times for all different reasons, hospitalized for nuetropenic fevers and then infection one week later. I had to have a feeding tube that I threw up twice. I got a port placed and it was the best thing I've done. I had a liver biopsy. I had a weird breathing treatment. I have two creepy radiation masks of my face/head. Got three radiation tattoos across my shoulders/chest that will be there forever. I gained 40lbs from a 4 month high steroid treatment regimen, to only drop down to my lowest weight in years due to chemo and radiation. I have had to force myself to eat and realized the amount we take tasting for granted. I have mucousitis. I have drug induced hypothyroidism. I have come accustomed to giving myself blood thinner shots twice a day. I had a 6" x 6" tumor mass/cluster removed from my neck. Received 2nd and 3rd degree burns from intense radiation to my neck and head. I lost all my hair a second time this year. I lost a good friend to this crazy cancer and it lingers in my head daily that I am still here and she is not. I have learned that cancer is my job for now and it will stay that way until I am NED (no evidence of disease) or don't have a choice.

Personally life was really pretty great this year. I traveled when I could, headed to California, Bear Lake and then traveled around to things in Utah that I had never made the time to see like the Spiral Jetty, Peach Days, Snowbird and Eden Balloon Fest. I went boating. I saw the Dhali Llama and got a creeper picture with him (he didn't know though...) Saw some great friends get married. Celebrated the 4th and 24th of July, Halloween and New Years. I worked when I could for a company that has been more than flexible with me and I'm beyond grateful. I finally am in my own place and have all my things in one place and no more storage unit. I had my best friend some in and surprise me from out of town multiple times because she knew I needed her. I entertained the idea of dating even if the other person didn't have any idea that's what was happening - can we say friend zone? I need to work on that... I reconnected with some friends from years past and they have been some of the most beneficial friendships through this all. I met my mini melanoma soul mate Ruby and am so happy she is still fighting on without even realizing she's fighting. Also becoming good friends with her Momma has been a blessing in itself. I had people spoil me and support me and walk with me and send letters and cards and presents and elf deliveries and a couch delivery and just so many things!

All the ups were met with their downs that's for sure. I lost some amazing pet friends as well as some great acquaintances.

For 2017 I want to live in the moment and, not to be morbid, but I want to just live. I want to make it to next New Years feeling better than I feel today. I want to gain strength every day - mental and physical. I want to still be the Alexis that just stops by to say hi cause I was in the neighborhood or sends you a text because you popped into my head - even though I know people think that's odd. I thrive on connection and want to have more of that with those in my life. There are too many days that I feel so lonely yet am surrounded by so much love. I hope to change that feeling and build up my core support group so they can hear me even when I'm quiet. I don't want what 2017's negative potential to make me hard and cold. I want to hold out hope that there is still good in all people. I want to be unapologetic-ally nice to those around me and still find the positive in all the things I can. I want to spend more time building traditions and experiences and adventures with those I care about and not have to apologize for who I am. I want to show people what #stageIVlivin is all about so they can hopefully live their lives more fully.

2017, I hold out hope for you. I want to believe you will be kind to me if I am kind in return. So, bring it on 2017.

My New Years Cards

Couldn't resist these glasses

My New Years crew for years now

Gubby and my 10th New Years together! <3

All things medical

It has been three weeks since surgery and things are going pretty well. The scar is minimal and the swelling is still going down. I have had many people say they feel like it is much better than my last scar. Um, thanks? I knew it wasn't the pretties scar but I guess to have others tell you that is kinda weird. But regardless, it is healing very fast and looking good.

Now the drain...
I am not a fan of drains. It is a love hate situation. I know you need one and it is helpful and all but man they kinda suck and especially when they don't work how they are supposed to. Mine stopped draining accurately about 6/7 days in. A lot of the drainage wasn't going into the drain but was leaking out of the hole entering my scar. Gross I know, but I would say 25% was going into the drain, the rest into bandages/gauze's. By day 12 I was done with it and luckily the nurse pulled it. Lets just say it definitely wasn't working and was practically completely clogged. I was told to express the buildup liquid at home and so I did. And I filmed it. Yep, totally did. So if you like gross weird videos you can see it here: https://www.youtube.com/watch?v=C9wX0Ec7zRk I have had some redness in the last few days so I stopped in to have it checked today and they had to puncture it and drain it as well. I am on antibiotics and hopefully it will stop accumulating soon.

The white part is what was inside... crazy!

Just a bit special. Drain issues. 

Liver
My liver was really good - legitimately normal while I was in the hospital! So exciting! But... then spiked into the 200's again a week later. Now it is trending back down, without any additional meds. They assume it is from having anesthesia as well as some of the anti-nausea and pain meds given. I just have a super sensitive liver now and forever it seems.

Diet
Since they had to cut the bile ducts in my neck, I was put on a strict NO FAT diet. Yep, no fat. nada. Not even supposed to have a gram! The reason is because fat processes through those ducts and in order for them to heal fully there needs to be no fat circulating through. I.e. no fat. It was torture. So many things have fat in them, and the things that don't like vegetables are really hard for me to eat/chew still. It's was an adjustment to say the least. Best non-fat find to date? Grandma Sycamores WHITE BREAD! And delicious, foamy nonfat chai lattes. Today the doc gave me the go ahead to have fat! Pretty excited to say the least! I actually had a break in appointments after and him and I were getting lunch at the same time so I got to share my fat-full meal (blackened salmon salad) with him and get to know him a bit better which was nice.

I received the pathology report as well. There was 38 lymph nodes removed, 14 of which had melanoma in them. I guess the large "tumor" was a grouping of matted lymph nodes, not just one big tumor. And that "numerous lymph nodes are grossly positive with tumor." There is something about reading about what you have that makes it that much harder. Although I know it is real, it is that much more real when it is on paper in front of your face. Never fun.

Now on to the plan. I will be doing full radiation on my neck starting on November 10th. This will hopefully kill the remaining cells left behind after surgery (we knew going in that it was impossible to get clear margins/all the cells). Radiation will be  20 sessions. Radiation is done everyday, Monday - Friday. I am not sure yet how long each one takes but I would assume I will be up there for about 1-2 hours each time. Planning today went well and I feel alright going forward. They made my mask as well as gave me my first tattoos, three of them. They are little dots to mark where they need to line me up each time. One on each shoulder and one in the middle of my chest. Primal style with ink and a single needle.

The center of the "X" is where the tattoos are (not the full ink you see here)

I was also presented at tumor board again (yes, I am told I am a "frequent flyer" there) and because of the cancer being so aggressive I need to hit it from two ways, and the options for that is chemo. The name of the chemo drug is carbo-taxel and it is able to be given while you are doing radiation, unlike all the immunotherapies that are the other options. This is an 5 hour outpatient infusion chemo that is given every three weeks, up to 6 times, and I am starting that on November 10th as well. And yes it is a make you sick, lose your hair kind of chemo. Right when my hair was really taking on some character. To compare it to my other chemo regimen, this is 2 drugs where the biochemo was 5 drugs at once. I'm hoping I tolerate it well. I had my ugly cry about it and my restless nights (probably just the beginning of those) and now am pretty ok with it all. The timing just sucks, but when is there a good time to start chemo and radiation, or a good time for cancer? The answer is never.

Brain radiation is still in the works, that's about all the info I have on that. Hopefully will find out more soon.

New scans (CT and MRI) on Friday the 4th.

I learned yesterday that one of the people I would always bump in to up at Huntsman (his wife is the mom of some of my childhood friends) passed away from his stage IV lung cancer, diagnosed in May. So hard. Last time I saw him he was having a hard time overall and it just makes me sad to see how many people are affected by this damn disease. Oy.



Here's to treatment options 9 and 10!

Here is a recap:
Surgery #1, Biochemo, HF10/Ipi, BRaf #1 Mekinist/Tafinlar, BRaf #2 Zelboraf/Cotellic, Nivolumab/Ipi Combo, BRaf #1 again, Surgery #2. Now radiation and chemo.

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!

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.

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

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

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

Friday Update

I have been feeling slightly better each day, but definitely am still a whole lot of tired. I am doing really good at 3 hour naps and then feeling like I want to go to bed again at 6 or 7pm. I have to force myself to stay up until at least 9, that I can feel ok with.

I had a follow up appointment yesterday for a skin check and the clinical trials I was involved with early last year. I learned that one of the studies is going to compensate for each visit, approximately $45. I'll take it! All my skin checked out good, no new worry spots or things to biopsy which is always great. I also talked to both my oncologists about my damn gallbladder and we decided to do a formal ultrasound before treatment on Wednesday and see what is happening and how many stones are there (as well as how big they are) before deciding on surgery. I have been told I can have it out whenever I feel strong enough for the surgery. That is a tough one because this treatment has decided to kick my ass so I am not sure how I feel about putting a surgery on top of it. Or if it will just be good to get it over with and feel super crappy all at once? Why are these the decisions I have to make? I would much rather make the decisions of what kind of frosting to put on a cake I made or what to drink. Ya know, simple decisions.

It is a holiday weekend and I have very little plans, but the plans I have are great with me because it will just be stuff to keep my mind busy before heading into treatment again mid week. When you know it will make you sick it is hard to get geared up to go in... mind games I tell ya. I am more prepared now and know what to expect so I wont let it sneak up on me like this last one. I have my Gatorade and Ensure stocked up as well as a cozy bed!

Thank you to all who have written letters, we're up to 9 now. So nice of you to take the time out of your day to send me a little note. I haven't read them all but I am excited to see who some are from. Like I said, I am going to reach for them when I am having a crappy day or just need a little extra something something from my army.

Good vibes for the weekend and treatment next week!

A request from me to you

The most common thing I get asked during all this cancer BS is "what can I do for you?" Or "is there anything you need?" Most of the time my answer is no because I'm a bit stubborn and I am also a bit spoiled and people have already shown up with whatever I would request if I did. But this is a bit different. I am asking you - family, friends, acquaintances and even blog followers I've never met - to do something for me. This next chapter in this fight is not going to be easy and the past week has proved that to be very true. I would like you to write me a letter of your hopes for me and this current treatment as well as my life going forward. I won't open them right away but when I'm feeling crappy or struggling I will pull one out and get a little pep in my step hopefully. Is this a bit cheesey? Yes, but it is what I need from you to help keep my head up and stay positive when my body feels like a truck hit it!

Please mail or drop them off to my dear friend Elisas bakery,

The Baking Hive
3362 S 2300 E
Salt Lake City, Utah 84109

Pick up a Dirty Johnny or some Minty Mandy cake while you're there too... 

Can't wait to hear from all of you!

Xoxoxo
Alexis

The plan

We have the plan for the next few months. I will be getting my port placed on Tuesday May 10th. This is an outpatient procedure done under conscious sedation - what they do for colonoscopies and such. I have had this before and I am definitely not conscious which is great! A few people have asked if I had a port before and I have not. Ports weren't usually given to Melanoma patients until recently. Before just recently most treatments were not long term infusion based so it wasn't needed. Since this treatment plan (and the next option if I don't respond to this one) is a long infusion based treatment it is a smart idea. Although I'm not looking forward to the surgery I know it will be good in the long run. This can stay in for as long as I need it - years even. 

I start my treatments on Thursday May 12th. The first 4 treatments will be the combo of Ipilimumab (Yervoy) and Nivolumab (Opdivo). Treatments 5-however many will just be Nivolumab. The first 4 treatments will take approximately 6 hours in the infusion room. After that it will be around 3 1/2 hours. 

I am hoping I respond well to the treatments and don't have many side effects. I am going to try and carry on with life the best and most normal as I can. I have been working a bit but all of the things I have to do I can do from home at my own pace which is great. 

For now I am enjoying my last weekend before the next steps! 

Onward ho!  

Live Updates From My full Day of Scans and Appointments

It is currently 4:18am and I am lying in bed, awake. Sadly I woke up from the pain in my face from the swelling around 3:45am and took some Tylenol (I know I probably should take something stronger but oh well) and then have been trying to fall back asleep since. I have been thinking of the day ahead of me, what needs to be done; take jewelry off at home, what I'm wearing today, what time I need to wake up to start drinking the nasty contrast for the CT scans. etc. And then thought I should write a blog throughout the day as I have time. My day starts at 8:30am when I have to start drinking the barium sulfate contrast. I will drink that for an hour and a half leading up to my scans. I have blood draws/IV placement at 9:30. CT scan at 10:15. MRI at 11. Psych follow up at 1pm. Then have a break to get some food in me since I can't eat before drinking the contrast. My sweet friend is meeting me at the hospital to grab food since I have a bit of a break. After that I then have my appointment with my oncologist at 3:30. Here we will get the results from the scans and hopefully get some more answers about what is happening with my swollen and painful face. It is a long, full day.
Many people ask who goes with me to all of this and often offer to join me. I usually go it alone unless I know big things are going to be talked about, then I may invite my family up. Even then I'm reluctant. I have been dealing with all this for so long (7+ years, and then heavily for 15 months) that I just feel it is annoying to bring someone else along for the long waiting game. These are long, drawn out days. My appointments usually take 2+ hours and I feel that is a lot to ask of people to sit around with me. I don't like sitting through it, why would I ask for the busy people in my life to do the same? I also feel like I have to entertain them to a degree and that's not what I'm there for. I know it is silly, because if someone asked me to go with them I would be happy to spend my time waiting with them. Ahh the crazy role reversal.
I'm going to hopefully get some more sleep now and will update this through the long day ahead. Gotta love being able to do all this on my phone! 4:38am and back to sleep I go (or try at least!)

10:24 @ Huntsman
I just finished my CT scan and am waiting for my MRI. They were able to get my IV placed on the first try which is always nice as I am a hard poke. My veins are sick of being bothered. I ran into some of my previous nurses and they agreed that my swelling is most likely inflamed parotid glands, what we do for those I am not sure. They also find it strange that my previous IV/blood draw sites all are flaring up... My body is just not liking things right now.  After the MRI I should be able to grab a snack before my 1pm appointment. Here's hoping!

12:16 @ Huntsman Bistro having a snack
All done with scans/MRI. It's always nice to have them done and out of the way for a while. My body really hates the contrast I have to have for them so that doesn't help either. Not sure how I feel about the scans, not sure if I feel like they are going to show progression or stability. The way I've felt the past 10 days gets my mind wandering to things I don't like but I try my best to not get too ahead of myself. I will say, no matter how many times I come up here I'm always in awe of the view.

3:06 @ Huntsman
Psych follow up all done. Pretty straight forward, went over managing anxiety related to everything and just options available to me as far as resources. Since my panic attack I've only had a few small anxiety moments but am able to recognize them quickly and calm myself down.
My dear friend met me at Starbucks at the U of U hospital and we chatted and had some mid day caffeine. Much needed - both the talking and the caffeine. She's dealt with cancer more than she should as well - losing her father and uncle within months of each other. She's a good person to have around and understands the cancer world and all it's craziness. She and I have become very close these past 15 months and I'm very grateful. Now just waiting to go to my final appointment at 3:30 to get results and answers about my face.

5:32pm @ Huntsman, still (in my car though)
I am finally done with my appointments. My last appointment was with my oncologist. Scans showed that my tumors have stayed the same for the most part since my last scans 8 weeks ago, no bigger but not smaller either. There are no new tumors and my brain is clear too which is great. Since I have basically hit a plateau and side effects are starting to pile up they feel the best thing to do is stop the BRAF inhibitors and switch to the Ipilimumab/Nivolumab combo. I'll go more into this in a separate post. This also means I can stop taking the prednisone which is great!
As far as my face swelling goes, they brought up a head and neck surgeon and he agreed that it is the parotid glands but said they aren't infected which is good. There is a very very slim chance it is mumps, yes crazy I know, but we still needed to do an additional test to make sure (which meant an additional blood draw since they took my IV out after my MRI). Regardless I can start to treat this at home with heat, massage and lemonheads. I can deal with that. I feel pretty good about it all for now but I am guessing I will start to think it all through more in the next few days. Right now I'm going to see a lacrosse game and a baseball game.

9:44pm @ Home
I decided to go see my friends daughter play lacrosse for a minute and then watched my favorite little tike play baseball, if you want to call it that. It was good to just decompress for a little bit. I turned my phone on silent and just enjoyed the simpleness of the night. Grabbed some dinner and now I'm home. I'm attempting to put heat packs on my cheeks but it is proving to be interesting in the least.
Processing the day a bit and will be heading to bed early tonight, as in when I finish this post.

It was a day. Not good, not bad, but a day. Happy to have it done and now have some things to move forward with and decide. Now let's hope the face swelling goes down quick and I can get back to looking like my normal self.

Goodnight.

Immunotherapy is getting some good facetime!

I got a message from a friend today that NPR was doing a segment on immunotherapy and said I should listen in as it is highly focused on Melanoma. It describes in a good detail what exactly immunotherapy is and what it does when administered.
Immunotherapy has been a part of my treatment since the beginning. My biochemo was 3 chemo drugs and 2 immunotherapy drugs. My clinical trial had one part immunotherapy and one part injections. The treatment I am on now is not technically an immunotherapy but does act very much like one. My next treatment is two immunotherapy drugs combined.

Also, the April 4th issue of Time Magazine cover story was focused on immunotherapy as well and was a good read into how specific the treatment is, as well as how hard it is to get access to and fund these very expensive treatments. Let me remind you that my treatment cost last year was over $750K charged to my insurance (man do I really love my insurance company!!!)

I have attached links to each of these reports - worth a read!

Cancer Immunotherapy Article in Time

Immunotherapy - This is one that only Time subscribers can read sadly.. but worth sharing if you are a subsriber.

The Diane Rehm Show and look for the The New Promise of Immunotherapy Cancer Drugs (April 21, 2016) episode. Or follow this link: http://tunein.com/embed/player/t105523715/

#rallyruby update

Little Ruby is a little tough fighter!

Here is the update on her and her family.
Her lung mass biopsy came back positive for metastatic melanoma and then was followed by a PET scan. From that they found that it is only in her lungs, no where else which is really good! Also the insurance/drug company allowed the drug to be administered her in state at Primary Childrens - they don't have to uproot their family!
Ruby got a port-o-cath and her first treatment of Nivolumab on 4/8. So far, 10 days out, she hasn't had many side effects except some soreness from her surgery of the port and then some tiredness. Amazing. Blessings upon blessings.

Again, you can follow their journey here: http://thacksmack.blogspot.com/

Keep them in your thoughts and prayers and that she continues to tolerate treatment going forward.

Little jaunt to the store and stuff

Lately I have had more energy than normal, not sure if it is just that my body is tolerating things well or the my love/hate dose of prednisone (steroid) I am on. I am leaning towards a combo of both but regardless I have had more energy lately.
I was able to go out for a good friends bachelorette party last weekend and stay out way past my normal bedtime, like hours later. I was very impressed with myself. I was in turn exhausted for a day or so but it was worth the fun since I wont be able to make it to her destination wedding next month. (On a separate note, I had some weird reaction the day of her party and was red like a sunburn in really random spots... still not sure what was going on. Thankfully that has gone down)
Last night I needed to run to the store for some things and the place I am dogsitting is close to a grocery store so I decided to walk to the store. This may not seem too crazy to some but keep in mind I haven't had the energy to be "active" or "work out" in over a good year. Even before that I wasn't too active - just mostly physical therapy for my old lady back in the pool (I was the youngin' in the pool everytime) So the fact that I felt good enough to think about walking the half mile round trip route to the store is a big deal. So I did it. Walking back was a little challenging since I bought more than I expected so it was like weightlifting too.
I am definitely out of shape, but I was still able to do it and I'm impressed with myself. Baby steps. I decided to go on the walk again today and got myself a tea. Today was a bit different since it was in the sunlight and as I have said before my meds basically turn me into a vampire and I burn in minutes while being outside. I got a bit of sun yesterday just driving in the car.. I'm a mess. Unabomber is just the look I am going to be sporting from here on out.
I am hoping to stay feeling this well and continue being active. Need to build up my stamina and get the blood flowing. Again, one day at a time.
Now off to a girls night barbecue.

My unabomber attire for my walk

Swollen and red.. 

Sunburn? Reaction? Who knows...

Looking back at biochemo days...

A year ago today I was at Huntsman Cancer Institute, checking in for my 5 day inpatient stay to start biochemo (3 chemotherapy drugs and 2 immunotherapy drugs all at the same time; 5 days on; 16 days off x 3 rounds) I was terrified. I had a good idea of what was ahead of me but also no idea at the same time...
Biochemo definitely was one of the hardest things I have ever endured. I don't remember the last two days of the 5 days inpatient, they are completely a blur. It may be that they push your body to an extreme toxicity rate that your mind just blocks it out. Who knows. All I know is that I am happy it is behind me and that I wont be doing it again.

Although it was brutal, it showed me a lot of things. It showed me what courage looks like, even if that meant just making it through the next 30 minutes of rigors (extreme shakes during a fever) or it meant making that lap around the hospital floor so that you got some extra circulation in your legs and blood flow in general. I learned what strength meant and I leaned on my family and friends to help build that up, day by day. Sometimes strength doesn't mean grinning and bearing it, sometimes strength means breaking down and sobbing while keeping your arm still as they place a PICC line. Or it means sitting up outside of bed and working on a puzzle so that you don't sleep the entire day away. Or dragging that dang IV pole around with me for 5 days... and courage not to punch it when it would beep at all hours of the night, talk about the worst noise ever! #Myarmy showed up and #teamlex was formed; I have never felt more loved in my life.

It's crazy to think how long I have been in the trenches with this cancer and hard to digest the timeline that is ahead of me but for now I am here, trying to make the most of what I have been dealt.

Melanoma, I hate you with a passion but I can't deny that you have helped me change my outlook on life and the people I choose to share it with. I have made the choice to face this with positivity and and possibility - to take the worst thing that can happen and make it the best thing that's happened. It is a daily struggle but worth the hard work.

I have come so far from this day a year ago and hope you all follow me as I continue this fight until the end. Thanks for those who have embarked on this insane journey with me (especially those amazing friends who met me in the lobby and honked at me driving up on day one, you know who you are!) I don't know what I'd do without you.

Love you all to the moon and back, a thousand times over.

xox

TL: Me and my IV pole, day one. TR: One of those moments I don't remember

And below: My message to Melanoma!