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