Quality over Quantity

Yes, we have reached this point.

Ever since I returned from my trip to Portland I haven't felt very well. I have had extreme fatigue and weakness. I have been a bit short of breath, and the best way to describe it is that I can feel my lungs. They don't hurt, I am just aware of them. There is a slight wheeze in my deep breaths. I kept telling myself that it is just the Keytruda starting to work and maybe getting a little pneumonitis from the treatment (that's one of the side effects). I started to realize that something had to be off with my oxygen but when I went in for my second infusion (this round) and they would test me it would be in the normal range.
I finally called to tell them what my thoughts were and how I thought something was wrong. They got me up into the Acute Care Clinic (basically an emergency center at Huntsman) and started to do some tests. Again, sitting my oxygen was in normal range, around 96%. They then did a walking test and it dropped down to the 70's. This caused us to get a emergency CT scan. I already was scheduled for a MRI that day so it was just added to the mix. When the CT was read the doctor came in and said that there was definitely disease progression and that they had made an appointment with my oncologist for the next day and he would go over more. I knew that wasn't good. In my head though I thought that we would maybe hit it with some strong radiation or switch to something. Regardless I came up to the appointment the next day.
My team came in and we were talking about how there was definitely pneumonitis in my lungs and we would add my favorite thing, prednisone, to help take that away. Maybe pausing the Keytruda for a week or so to give it time to calm down. My doctor left the room for a minute and then came back in. Everything was different then. He said that he had sent my scans over to another Melanoma guy to look at and see what he had to see and it was what we all didn't want to admit. It wasn't pneumonitis, it was all disease with a small bit of pneumonitis. The cancer has grown substantially in the month between scans and has involved my lymphatics throughout the lungs and is growing too rapidly for any treatment to keep up. I have run out of treatment options. I am at the end of the line for things and we need to enter into symptom management, and I was given 6-8 weeks left.

6-8 weeks.

The tears started to flow as I realized what I was hearing and that we were to a point of deciding quality or quantity. I wasn't supposed to get here. We've never talked numbers. We always are optimistic. We had an unspoken understanding that we don't talk numbers because I will be the one who defies the odds. Tears were being shed throughout the room. He offered that I could do chemo again, but it would only add 2 or so weeks of life. And I would be sick. I don't want to be sick if I only have a limited time.
So here we are. I don't know what this looks like. I don't know how fast I will slowly fall ill to the side effects of the tumors and cancer taking over. Right now I feel good, look good. Prednisone helps with that. I can feel the tumors in my lungs are there, can feel that there is some progression in my bones and around my liver area. I know it's there. That is what is scary; I can't say that I don't believe the timeline.

Since the news I have been trying to tell people intimately but it is so hard and draining. I feel like the last few days have lasted a lifetime and all are blurring together. This morning seems like a lifetime away and my mind is just going a bit numb. This news that I never wanted to share is now a reality. It has already brought out some tough conversations, ones you have to have in these times. Has also brought forward the need and desire to see those I care about and hug them all at least one more time.

I don't know what this is all supposed to look like - all I know is I want to spend the rest of my time with the people I love, doing the things that make me smile and laugh and making memories. I have been so lucky to have been living out my bucket list for the past 2+ years that there isn't anything I feel I have to do. What I want is to be with the ones I love and care about. I will keep on doing things as I still feel well, and when I start to not feel well we will cross that bridge then.

For now I am right back to my motto along the whole line of this fight, one day at a time. One moment at a time, and truly one second at a time.

One day at a time.

Lazy days

Man have I been pretty lazy lately. 

This last chemo has hit me a bit harder than the others in the fact that I have had a good amount of bone aches and just overall exhaustion. I could lay on the couch pretty much all day but try my best to get out of the house at least once a day. There has been a few days without that happening and I'm perfectly ok with that. It's hard to know if it is just low white counts again or if I am going towards anemia. Only way to know is with the blood tests and I don't have those again until Tuesday. 

Eating has been really hard lately as well. The things that sounded good these last few weeks don't sound good anymore and then there isn't much else that has taken its place. I have been craving shrimp a lot though. A friend mentioned it may be because I might need the iron or something, totally understandable if so. I am trying hard to get a good size nutritional shake in each day so that I have some vital nutrients in me. I still throw up every morning (minus a couple mornings this week) so I will be excited to be over that phase. 

Tomorrow I have a neck ultrasound to see if I still have any remnants of a blood clot in there. I truly hope I do not because I'm pretty sick of giving myself blood thinner shots twice a day and I'm pretty sure my stomach is sick of it as well. I will say I've gotten pretty good at them though. So weird to think I am good at that... my life is weird. 

Now the big stuff is on Monday. Scans. These scans will show whether or not we will continue on the treatment we are on or if it isn't working. If the tumors are stable or smaller, we stay. If they are bigger or there are new ones, then we go to the next option. The next option I have no idea what that is. Makes me very nervous to think I am coming to the end of not having many options to try, makes it all a little too real. People have asked how I have been feeling about these scans and I really can't say clearly that I think they will be ok. I hope I'm wrong and that things are working and all this really hard stuff I've been doing since October has been worth it. We will find out on Tuesday. If all is well I will get chemo #5. We shall see.

Last week I went with little Ruby to her infusion of Nivolumab (Opdivo) so I could see what her day looks like. Man, they need to redo the outpatient chemo/infusion center over at Primary Children's Medical Center. It was such a rough and crowded room to be in and it just needs windows or something. I don't know. It made me even more grateful for my insanely nice infusion room. She was a champ though and has handled things so well. That little girl just makes me fight harder just cause she is fighter more than she even knows. She knows she's sick, but she's been very lucky to not feel it. I hope this for her always. I want this drug to work for her so badly. 

As far as fun stuff that has happened, there hasn't been too much. I try going out to eat mostly but it is hard to find things that sound good to eat - but I still go! That's usually what I end up doing to get out of the house. My energy doesn't allow for too much more than that, but it is plenty for me. I love my social time! I am trying hard to get my random second room in my place all put together, but man I have held onto some random stuff that is for sure. I think I'm making head way though. 

I'll also just say this as well - I will miss President Barack Obama. In just a week since our new president so many things are in the air and it's amazing the level of comfort Obama gave me in regards to my illness that I can feel is threatened now and it just makes me sad. It's amazing how one person can change a whole outlook on things. I wont go into detail because, well, it's too much for me, but I am hoping to not have anything hit me too soon as far as the healthcare stuff goes. I already have my hands full, hoping to not make it be more. I'm barely lucky to have insurance right now (that's a post I decided to not write because it is just too much.) Anyway, here's hoping that whatever they propose it will take some time to go into effect. 

This wasn't a very uplifting post - sorry about that! I've been pretty mellow these past few weeks so not much to write. Hoping for some good news to write on Tuesday! 

oxoxo

Oh, my shirt is relaunched again as well until February 2nd. go to booster.com/notjustskincancer if you want one! 

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

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

Escaping to California

When your mom tells you to buy a ticket to California on her then you jump online and book your flight. I was lucky enough to make it work before surgery and was able to spend 3 full days down visiting my best friend of 23+ years and her family.
I got there late on Thursday and we had a nice dinner at a Mediterranean restaurant in Long Beach. The next morning I got to sleep in a little while she took the girls to school and ran a couple errands. After that we headed out to get a special coffee. Right next to the coffee shop was a reflexology massage place advertising 40 minute massages for $20 - um, no brainer! It was an experience to say the least and very enjoyable too! That night we went out to a movie (Bad Moms) in a VIP theater where they serve you everything - your popcorn and all. So nice.

Adventures of Ash and Lex

Saturday we decided to brave Disneyland. When we got to the park it was so crowded, like crazy crowded! The girls were wiped out (me included in that!) by 2ish and only making it on one ride the whole morning so we headed home for a mid day siesta aka nap. Ash and I came back around 5 and spent some time wondering through the shops on main street and then had dinner over in California Adventure. The parks were both around 90% occupancy that day so to say it was madness is an understatement. The rides we wanted to go on were all at least an hour wait, and Tower of Terror never went below a 2 hour wait. We rode 2 1/4 rides for the day (I don't count the Tiki Room as a ride, so that's where the 1/4 comes in). Even though we didn't get on any rides really, I still had a great time. I was perfectly content with the amazing people watching for 10 hours and spending time with my best friend and her littles.

Ash and I

Waiting in line Selfies

too late..,

Dumbo!

We wore them out...

The best people watching Happiest Place on Earth

You're never too old for Minnie ears

Sunday we went to the beach and played in the sand and I got to dip my toes in the ocean, one of my favorite things. The girls played like crazy and got sand in every crevice but had smiles ear to ear and endless giggles. That night we did dinner and a show i.e. the presidential debate. Andre cooked and it was a lovely night once the debate ended. Only sad part of that day is that I was reminded of my dang neck because it started to hurt so immensely. It was bad enough that I had to go lay down and take all the meds I could think of to help relieve it. It finally eased up 2 hours later and then has been at a level 4-6 ever since. Other than that and a brief issue of nausea after the reflexology massage I didn't really think about being sick. Being sick wasn't the focus, the focus was on enjoying the day and the girls and being with my friend. It was so so nice. It was one of my favorite Cali trips I've ever done and it also was one of the most mellow. I loved it. And I loved the girls and their constant playing and giggling and loving me. I love my friend and how her and I are still so close after all these years and all the things we've both been through. Although I wish she were closer, it is always a great excuse to make it out to the coast to visit.

Good ol' Dre

One of my favorite things - toes in the sand

Who doesn't wear their Minnie Mouse gloves to the beach?

 

I am not sure when I will make it there again, but I hope to recoup soon and get there soon because man do those girls have my heart!

Silly face selfies. So dang cute. 

Liver ... I need you to work with me!

The liver saga continues!

I got the liver biopsy results today and it showed drug related inflammation and the same characteristics of autoimmune hepatitis. As not fun as that sounds, it is actually better for me for the moment. Because it shows the same properties as a compromised, damaged liver I am ok to start a drug that is usually used for liver transplant patients. This drug is called CellCept. I can also start tapering off, yes off, of the prednisone (steroids) that I dislike so much. The goal is to get me off of the steroids for a couple reasons, one being the long term effects are large and the general side effects are a lot to deal with (if you haven't noticed...) and the second and main reason is that I can not start a new systemic cancer treatment while on steroids. If everything goes well I will be down to 5mg or off completely in 3-4 weeks. Goodbye chipmunk cheeks, extra water weight, irritability, ravenous eating, shaking hands/body and sleepless nights! 

I also had my liver levels checked today and sadly they are elevated even more than I was when they admitted me two weeks ago, in the 700's. Thankfully they agreed that I could monitor from home and not be admitted to just sit in the hospital. I was worried that they were high again because I have been extremely tired the last few days and extra itchy (one of the signs that my bilirubin is higher than usual but I don't have any yellow discoloration). I don't have the normal symptoms of an elevated/pissed off liver like dark urine, yellow skin or eyes. If I start to see these things then I will go in, but even when I was at 1200 I didn't have these symptoms so I don't think it will be a problem. I am just happy to not be sitting in the hospital writing this! 

I will start these meds as soon as my pharmacy fills them - most likely Thursday morning (day after tomorrow) I am hoping that the side effects aren't too intense and are easier to deal with than the steroids. We shall see. 

So liver, I need you to work with me! Please tolerate and respond to this new med so I can move forward in treatment and not waste anymore valuable time. Just being off of a treatment for two weeks my tumors in my neck have started to grow. Who knows what is happening in my brain and lungs. I try not to think about it. Still no symptoms from those areas so I am hoping to keep it that way. 

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.