Staycation

I spent the week up at Snowbird, a ski resort that is open in the summer with activities and such. My best friends own a week long timeshare there and are so gracious to allow me to crash with them for the forth year in a row. Every year it has been so different as so much changes in a year.

It is so great to just escape the valley and heat and reality to a serene beautiful mountain where you can just zone out, go swimming, watch for animals or just hang in the room.

Top of the tram at Hidden Peak - 11,000ft; Salt Lake Valley straight ahead (Top), Heber (Bottom)

Jack is snorkling his heart out in this picture right above my feet

Morning routine

The view outside the room

As the week approached I didn't know how I would feel or where I would be in treatment. Orignially when I was on the Niv/Ipi combo I was scheduled to get my infusion half way through the week so in my head I was going to only be there for a few days. Obviously that has changed and I was able to stay the whole time - not sure they were truly expecting that but I did it! I only had a couple days and moments that I struggled but was able to pull through it. I used the spa pool and solarium a couple times and just relaxed and thought through things. My friends are crazy busy and have multiple small business constantly going so they had to come down to the valley almost everyday so I used that time to just relax and recoup. It was fun to watch their two boys enjoy their time on the rides and just be boys. They are getting so big and becoming their own little beings. It is fun to watch and just live in their simplicity.

Tell Jack what a selfie is...  

Ben and Anton in the room hottub loving life! 

  

Popsicles, SpiderMan, Selfies and Movies. This kid has my heart

We had groups of people come up practically each day/night and so that kept things lively and not so stagnant. Heading into the week I was worried I would hold back my friends from really doing things up while they were there since my stamina is non existent, my sun sensitivity is back and I'm extremely low on funds (I couldn't do the rides even if I wanted to anyways...) I don't think I got in the way, but I will never know for sure. Prednisone was a factor I know that, I ate everything! Ha! I told my friend she shouldn't have left me alone during my witching hours of 3-5pm... the chips just disappeared I swear! I am doing better at regulating it all but it is still a bit out of control. I'm hoping that once I taper lower I will see the water weight drop off and then I can work on the chip/treat weight.

My sungear in full effect! 

Yes, this happened. Ha.

At the pool in the shade, under an umbrella. Also, where is the tumor? 

My life isn't that bad if I step back and look at the giant picture. I just spent a week at a resort with my great friends because they are that nice to include me. When I started to have a meltdown, I went to a spa and stared out a wall of windows to a mountain side that had a family of deer on it. I was healthy enough to go for a week and enjoy as much of the time as I could. I watched two little boys enjoy all they could and play and swim their little hearts out. I spent time with my friends that I don't see too much cause our lives aren't intertwined as they once were - I miss those times but know that these times are just as important and have their own value. Was it hard to realize that I am now on the sidelines for real? Yes, but that doesn't change how I care about them as my friends and it just makes the memories a little different and may take a little more effort. They are worth the effort. Again, my life is actually pretty good, I just have this whole cancer bullshit to slap me down a couple times.

I am thankful for what I have, and for my staycation.

Care Package

My amazing best friend who lives in California sent me the sweetest and most thoughtful care package.
She is a school psychologist and had her kids all make me handmade get well cards. They range in ages but they are all grade school so they were pretty funny ones.

Knock-Knock jokes and all!

He also said he loves turtles on this card - and cheddar Pringles of course

So sweet

These warmed my heart. Some said that they hope I get out of the hospital soon so they must have made them when I had been admitted. There is something in having "Stay Strong" and "You Are Brave" written in little kid hand writing. Just so pure and simple. 

My best friend truly is the best. 

Scans today

Today is scan/restaging day.
Whenever you change treatments they like to have new scans so they can have a new place to compare progress to. My scans were originally scheduled for later this month so they got moved to the next available, which happens to be a Saturday afternoon. Had some other plans, but that's the life of a cancer fighter - plans aren't really a thing. You can try but you always know that something may alter the plans or you will wake up sick as a dog. You never know.

I haven't really thought much about these scans - the anxiety isn't really there so much. If I'm being 100% honest I wouldn't be surprised if it has spread somewhere else, but I don't like to think that. I have been so lucky to have it stay localized that I just wonder how long that run will last. I truly hope that thought isn't true but it's always a possibility.

Scans never used to get to me. It was just something I did every 3 months, then 4 months, then 6 months, then a year. Now back to 3 months (or more!) They came back clear for so long that I just got used to it. Now I know there are tumors (just my neck) so I know they aren't clear but they could be worse. Now I either have major anxiety or none at all. So strange.

On a good note, I started my new/old treatment on Wednesday night and now on Saturday I can see a noticeable difference in the tumors sizes. Smaller and so much more comfortable. I haven't taken a pain med (besides ibuprofen) since Thursday, which is huge. I was to the point I was talking them every 4 hours on the dot. So great to have relief. I'm still not fully pain free and sadly will be taking a good amount of pain meds for my scans since I can't lay flat without it freaking out... Having my sister give me a ride today which is new. I usually go these things solo, but taking pain meds I don't want to drive. I'm being smart - asking for help. Strange I know!

In prednisone news, the water weight and moonface kicked in yesterday. Woke up so swollen. I took some pictures out with an old friend and it took all my might to not be devastated looking at the pictures and how heavy I look in comparison to a week ago. The steroids make you ravenous and literally uncontrollable urge to eat everything in site. It is unreal and so hard to curb. My witching hours are 3-6. That's when it hits the hardest and everything in site needs to be tried. I have done my best to have sensible snacks around but man it is hard! I know water weight will go down once I stop the steroids, but the added weight from the ravenous eating won't be so easy. Really trying to control it. I am down to 80mg (started at 120mg) and will continue to taper as long as my liver enzymes continue to lower. At this rate I will still be on them in 5 weeks. Talk about a summer of roid rage! I will learn the tricks to deal with it, just have to work at it all. I do like the energy it gives me, even though it is false energy. I don't like when it is crazy anxious energy though, that's happened two days this week. Not a fan. Also it affects my sleep so now I'm on sleeping aids, necessary evil. I haven't talked to Oprah or slept are/drive or anything which I'm taking as a win. Each day is different.

Random exciting other things:
Going to Yellowstone in August and am really excited
I am looking for a place to call my own. Renting, looking for ideally a 2bedroom place. Keep your eyes open for me - no apartment complexes though.
I'm going on a staycation to Snowbird tomorrow and am making some fun treats for us to have (prednisone driven...) I get excited to cook when it is for other people. Planning on making smore bars and a tasty fruit tart. Yum!

Hope this weekend finds you playing and laughing and escaping the sad news of the world. This life is tough but it has so many little things to be so grateful for. Like making a fruit tart for friends - which really boils down to I am happy I have the energy to make something, that I can make it, that they will enjoy it and that I enjoy them enjoying it. Little things.

Oxoxo

Pool Day

Today was spent relaxing by the pool with a friend that I literally haven’t seen since 8^th grade. We grew up down the street from each other and then lost touch as we got older. Thanks to Facebook we reconnected and then thanks to my illness and some other factors we truly connected in the real world. Although so much has happened in our lives since 8^th grade, we are still so similar and parallel in ways. She has been a great support for me as she’s been in the patient role as well and knows the frustrations and ups and downs. It is different when people know what you mean when you talk about some of the medical things. She also is extremely healthy and is helping with my steroid cravings and just overall good health – I promise I am trying my best to follow suit!

Her husband is an uphill runner. Why that is considered fun I have no idea at all. Literally I was mind boggled asking him questions about it. He legit just runs up mountain sides to peaks – runs. He had a race up at one of the ski resorts today so we came up to relax by the spa pool and catch up on our chats and then watch him run. The pool was great, we stole half the umbrellas like vampires and just sat and relaxed and snacked and talked and it was really good for the soul to escape the valley for an afternoon. We then rode the Tram up to the peak to watch him finish his race. He took second place by barely a few minutes and still was jogging up the last part, which was sand mind you. He had no idea we were going to meet him at the top so he was pretty excited to see his wife there cheering him on. It was the first time I met him and so it was a pretty memorable meeting if I do say so myself.

As I was driving home I just kept thinking how crazy this life truly is. If 20+ years ago I could have thought forward to where my life is now I would never think even a quarter of it would be the way it is. You can plan all you want and have these ideas in your head of what you want or what it will look like, but nothing goes as planned. Life throws you curve balls and you turn in ways you didn’t think you would, for good and bad. But it all turns out. Although it isn’t the life I ever imagined it would be, I still am grateful for where I am and the people around me. Even with cancer it isn’t all bad.

Selfie at Hidden Peak, Snowbird, Utah

I mean really, does he look like he just ran up that mountain in an hour? Amazing.

Sporadic selfie 

Day One, Treatment Option 6 aka Treatment Option 4 act 2

Today is day one again. I have started the BRaf inhibitors once again so that I am on a treatment while we wait for some other options to be available. I am eager to see these start working as fast as they did the first time around and get some pain relief. Like I mentioned in the last post, it is getting a bit uncontrollable.

I had my liver checked again yesterday and the enzymes are coming down still, just very slowly. One is 118 (3x too high) and the other is still 400+ (supposed to be 60). They are coming down which we want but the longer they are up the longer I am on steroids. I know I am complaining a lot about the steroids, but man it is something else! Yesterday I was wired and in my form of "roid rage" for sure, just uneasy and buzzing. Don't like those days.

Scans/Restaging has been scheduled for this Saturday (exactly how I want to spend my afternoon) so here's hoping that things are still localized in my neck. Scanxiety is a real thing, and I am blocking it out until that day. Which I have realized I will have to have some sort of sedation for since I can't lay flat for that long without my neck burning a hole in my head... That should be interesting!

One thing to mention - I am sipping on a cup of coffee. Sounds mundane, but since my surgery in 2015 my body just doesn't want anything to do with it. I have tried a couple times to revisit it, but no luck. I am trying again today, it actually sounded semi good. I have a quarter of a cup, we'll see if I make it though it! Ha. Little things.

Happy day one x 6 to all my lovely followers - I am learning I don't know many of you! So fascinating!

Summer funk

People tell me a lot that they just don't know how I stay so positive when I'm in the middle of such a shit storm. Well some days it isn't easy. The decision to not live in anger or frustration is somewhat part of my personality but I just don't like that feeling so I run from it at all costs. Dealing with cancer is just one of those things. That said, these last few weeks have been hard. I can feel the effects of cancer practically all day and it is beginning to affect the things I do on a regular basis. My neck has multiple tumors and for some reason they are constantly pressing on nerves so that means constant pain which means constant meds on a schedule. I try to not let people see the harsh reality of the pain but it's getting hard to hide  

And then there is the steroid situation. Steroids right now are a necessary evil. Due to my liver toxicity/autoimmune hepatitis I need to take them to bring the enzyme levels down. Steroids have many side effects that have their ups and downs. The up is that they give you energy, but sadly it is false energy so you end up wearing yourself out more than you would normally. If you don't use the energy you feel kinda "buzzed". They make me pretty shaky and the heat makes all the symptoms worse. I went to a bbq yesterday and just being out in the heat made me extremely exhausted and so so shaky. It felt a lot like dehydration and/or heat exhaustion. Had to take a few hours to recoup. I just feel really physically weak. 

Like I said I don't like to notice and remember I have cancer - I don't like falling into the "cancer patient" roll. Too real. I want to enjoy my life as it is and not be reminded constantly that I'm sick. 

Anyways that is my rant for now. I just want to live it up this summer and really would like cancer to step aside. 

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!

Father's day

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

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

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

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

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!

Just another ER visit

Yesterday was spent at the ER, again.
I have been having a sharp pain in my upper abdomen that just kept getting more and more intense. After I started looking into why it would be hurting where it was, I realized it had to be my gallbladder. It got so bad that I decided to go in.

I had to go to the U of U ER since Huntsman doesn't have any options for evening and weekend urgent care. I was there forever... They did an ultrasound of my gallbladder and found multiple stones and one giant one. It had a freaking shadow on the ultrasound! Then the problem was to decided if it was infected or blocked. Luckily it wasn't either of them, but that also means that I couldn't have it removed while I was there cause it isn't deemed an "emergency." I was sent home (and finally was able to eat and drink a little something) and will talk with my oncologist and get a plan. I will definitely need it removed so I hope to have it sooner rather than later as the pain is pretty consistent and not comfortable in the slightest.

It has been a month that's all I have to say.

Sexy lady!

oh and they couldn't access my port so after 6 pokes they got an IV started... 

Shiz got real, real fast.

The last few days, well week has been a lot harder than I expected. Starting Friday night things just started to keep going downhill. I basically just slept the days and nights away, dealing with the constant fevers and trying my best to stay hydrated and eat whatever I could find that even sounded good. Then Tuesday morning came and I knew I had passed the point of feeling better and that dehydration had definitely kicked in. I was shaky and disoriented, nauseaous. When I left the bed to attempt to get up for the day I would only be summoned back to either sitting or laying again. I contacted my doctors/nurse staff and told them my concerns and they got me into the Acute Care Clinic (ACC) shortly after that. Once there they did some tests to decide if I was dehydrated and I could barely stand during them, my heart rate was in the 140's and my blood pressure was all over the place. Not to mention the steady fever of 100. Doctors there wanted to rule out infection as well. We started fluids and then pulled labs for the infection testing. After my second bag of fluids, they said they may admit me because my oncologist feared I was having a really rare heart side effect which is an inflammation of the heart as a muscle. Luckily, after the tests came back normal, they let me go home; 6 hours, 10 labs/test and 3 liters of fluids later. I felt better but definitely wasn't great. My friend helped me get home and then I headed to bed - still no appetite.
Everyday since I have gotten a bit better and a little stronger. I was able to run to the store - doesn't seem like a big deal but man it wiped me out! I stocked up on Gatorade, Ensure, Coca Cola and Sprite; all things you need when you're really sick and need fluids or nutrients. So much for the no soda thing I was working on... It just tastes to dang good when you don't feel good.

My sweet friends brought me a tasty dinner last night as well as some beautiful flowers. Their company was plenty, but the flowers and food didn't hurt either.

I am planning on laying low the rest of today and then hoping to venture out and do something social tomorrow. I am helping gather donations for Rally for Ruby on June 11th and a lot of the vendors will be doing Farm Fest tomorrow so I want to grab what I can. I truly have an incredible farmers market family - always stepping up to the plate for me. 

Here's hoping each day gets a bit better and that I can get stronger to head into the second dose of treatment. Keep the positive thoughts coming!

oxoxo

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

Fever city

It's been three days since treatment and I've had a rough go. I've basically been sleeping mostly and dealing with practically constant fevers, ranging from 99°-104° (I almost went in when it hit that high but it went down as fast as it went up) I also have sweat more than I have in ages just from the fevers rising and breaking - makes for some good curls though.
Today I've had a bit more energy in the last half of the day so I'm hoping that I just continue to feel better as each day goes by. Being knocked down so quickly does a number on me mentally and definitely reminds me that I'm sick. It also doesn't help that I can feel and see my tumors growing. Yep, from being off meds for 11 days they have grown and in the last two days they have definitely grown and are tender. This could be all my TCells attacking the cancer cells like they are supposed to but we won't know until scans in July. Here's hoping!
Definitely going forward one day at a time.

Damn tumors... Hoping it is a good sign and not sure growing out of control

Port O Cath and Day One of New Treatment

I am writing from my infusion room. Today is day one of my new treatment. I also got my port placed on Tuesday. Lets just say that was a terrible no good rotten day. Followed by another rotten day. For the port placement they give you "moderate" or "conscious" sedation. Long story short and to spare you the details, my body doesn't respond to the drugs they give you for this so I was much more conscious then anyone should ever be for such a procedure. It was awful. And then yesterday I was so sore from being so tense during the procedure, every muscle in my upper body was sore. I slept well finally last night and woke up feeling much better.

Before coming up to treatment I met my sweet friends Ali and Cynthia (and Elisa) at The Baking Hive. Ali's daughter is Ruby who I have written about before. She has stage 4 melanoma so I feel extra connected with her. I just hate knowing that she has to go through the same thing as me in her little 3 year old body. If you didn't know she was sick then you'd have no idea, she is still just a sweet little girl - carefree and happy. Her and her sister Jane decorated cupcakes and then Cynthias boys joined them and decorated their own. It was pretty dang cute to watch. 

My port was accessed for the first time today. They weren't able to put numbing cream on it or ice it before so I was a bit worried about how it would feel being used for the first time. I literally barely felt the needle go in - well worth the two days of pain for the ease of accessing it. 

Right now I am waiting for the pharmacy to mix up my first drug, Ipilimumab/Yervoy and then we will get started. After I'm done with that (90minutes) I will get my Nivolumab/Opdivo and I believe that is a 60minute infusion. I have planned on being here until 6ish so we'll see how close to that it actually is. 

Here's hoping I don't get sick from these treatments and everything goes well going forward and that I respond well. Positive thoughts out there for me please! 

xoxox

Infusion started

All hooked up

Getting accessed for the first time - a breeze!

Warning: Hazardous (but also freeeeee)

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!  

The Call

Today as I was running around I got a call from a number I didn't know. I only answer these calls when I don't have anything else going on - otherwise I let them go to voicemail. Who was on the other line is what I imagined to be a sassy southern woman from her accent. Here is the call (as best as I can remember that is)

Me: Hello?
Caller: Yes, is this Miss Alexis Waters?
Me: This is she.
Caller: (in the most monotone script reading southern accent) Hello, this is --- from Bristol-Myers Squibb patient assistance program. I am calling to inform you that we have approved your grant for the Yervoy/Opdivo combination and I will be sending the drug to your doctors office shortly.
Me: Wait, what? That is amazing! Wait, what drugs again? (because I was making sure she said both! I was only expecting one!)
Caller: (again, in the most monotone script voice, she read the script again) You've been approved for Yervoy/Opdivo combination.
Me: Oh my gosh!! That is incredible!! Thank you so so much! Amazing!
Caller: (sooo soo monotone script) You have a nice day.
Me: Thank you! You too!!

And that was that! I am pretty sure she has NO IDEA what kind of drugs she is handing out. Life saving, life changing drugs! She was ready to just get off the phone and on to the next call. Gotta love a scripted phone bank worker!

I have been granted the FREE yes FREE drug! Amazing! Earlier in the day my nurses called and we have my port scheduled for Tuesday and then my first treatment will be Thursday. Pretty amazing.

To put it into perspective - just the Yervoy (Ipilimumab) treatment alone is $400K+ that they charge the insurance. I literally was just gifted over a half a million dollars. Freaking incredible!

Thanks for all the positive energy you all put out there for me - it worked!

My Kind of Sunday

I don't think it gets much better than a Sunday where you don't really have any plans and just go with the flow of things and fill your day with things and people as you'd like. I woke up today and thought brunch sounded good so I got a friend to join me and we had a tasty brunch and a lovely cocktail. I followed that by hanging with one of my best friends and her munchkins on the farm. This included her 8 week old puppy. Puppies and kiddos that love you immensely makes all cares and worries go away - it is probably a proven fact. Just the innocence in them both just is so so refreshing. I then took a quick nap - a given on a lazy Sunday. Then went to a taco and tequila party at a friends, then went to my parents and that was a wrap on the day. Lots of animals, food, friends and love for the day. Too bad everyday can't be like this right?

I have felt better each day which is nice, my face has gone down more and more each day. We ruled out that I don't have mumps, which is good, but we don't know why my parotid glands decided to freak out. Heat compresses, massage and sour foods/candies has worked for now and I just hope that they don't always flare up when I catch a cold or what not cause it hasn't been pleasant in the slightest.

I haven't really put too much energy and thought into the next steps in this cancer bs since Wednesday. I know a lot of things are going to be put into motion soon, so I am just sitting back until I have some more direction. What I know for now is that I am going to be getting a port-o-cath (an implanted IV access in your chest) and that will most likely happen this upcoming week. I also know that my insurance denied the drugs (we expected this) and so the petition for free drug is now in process yet again. Put some positive thoughts out there that it gets approved and things can get moving. Cancer is a whole lot of hurry up and wait, and you sadly start getting used to it.

For now I am carrying on as I feel good and until there are things that get scheduled. I should know more soon though.

Hope everyone has had as good of a weekend as I have - I mean I went to a drag queen show with my mom, sister and two best friends, not sure you can top that!

xoxo