Friday, May 19, 2017

On my way to Cali...

Right now I am on a flight to California to spend the weekend with some long time friends. I have known one since I was 4 or 5. So let's just say it's our 30th anniversary of friendship trip! Pretty incredible when you think about it. Him and his wife saw that I wanted to go to Sea World/San Diego before my 35th birthday so they were kind enough to use their flight points to get me there and do hotel and car. Seriously so generous. We were supposed to go in October of last year, but surgery and treatment got in the way of that. This time we were able to plan a time quickly and I'm so thankful that cancer isn't getting in the way this time. I have my sun hats and sunscreen ready for all the adventures! I'm also so happy I have my appetite back AND have been cleared to have some adult beverages; or as my nurse said "you have some room in your liver for some alcohol!"  Thank you, liver! Champagne brunch just isn't as fun without the champagne! 
My best friend is going to try and come down for one of the days, as well as another good friend. Looks like a great weekend to be had! 

As I am sitting here on the flight (and as I was getting ready for travel, etc) I just keep thinking of how different things were just only a few months ago. I was in intense pain, couldn't sit in one spot for long, couldn't bend over to the ground, couldn't lift much; just so cautious of every movement. Now here I am, sitting for hours at a time, able to carry my carryon (and put it in the overhead bin!) able to grab my bag from the ground as well as baggage claim. Able to taste the drink I got on the plane. All while not being on any pain pills or patch. The body is an impressive thing I'll tell you. But I'd really like it if it would quit growing f'n tumors. Especially on my neck. 
My mind does wander on to think of what the next month will bring. None of it looks good; all of the options are hard. I'm thinking I will be having a surgery soon, but of course nothing is to planned on in this cancer road. Radiation. Damn radiation... a trial? Injections? Right now I have no idea. Won't know more until weds. I've gotten used to the waiting game. Doesn't mean it's easier, but at least I know that it's part of the game. Maybe game isn't the best description of it. It's something though. 

On my first flight today I sat by two lovely girls. We talked and joked about the conversation going on behind us (which was oh so entertaining!) and then I had to answer the question "so what do you do?" I've become use to the reaction I get when I say that I don't work right now and that I have cancer. I quickly follow up with something saying "but I do try and work when I can!" Or something that isn't so Debby downer. I don't want the pity eyes, and since I look healthier these days the pity look doesn't linger as long. You then gauge whether or not the ppl are comfortable with the subject or avoiding it. These girls were good and I could tell they were interested but didn't really know how to continue on. I brought it up later in the flight and we talked a bit and I got my PSA message in (or what feels like a PSA speech some days) but it's when you say "stage IV" or "it's in multiple organs" or "I had a feeding tube recently" that they are usually a little shocked. And that's when I realize how weird the cancer life is. Also how lucky I am to not look as sick as I truly am. All that said, it was a very enjoyable flight with these ladies. 

So, San Diego and fun here I come!On my 

Tuesday, May 16, 2017

Still no decision

Here we are late Tuesday night and there still isn't an action plan in place for the next step in treatment. Can I say though that I have some amazing nurses? I emailed my PA and asked for her to call me and she did, from her vacation in California. I mean how considerate is that? We talked about what I was thinking of going forward, she talked a bit about their thoughts and then said that she would then talk to the doctor today and get back to me. No call today though, so I know I will hear from them tomorrow.
Here are my thoughts.
Just Radiation: Not a fan. If just radiation, then the dosing will be much larger as there is a larger tumor/cells to treat. It will be a re-do of the side effects I had before and I would anticipate severe burns, troubles in my eating/swallowing/mouth with a possibility of a feeding tube. The larger tumor is right about my thyroid so it would hit that hard. The smaller tumor is right on top of my larynx so my radiologist fears it will permanently affect my voice. I also worry that it isn't enough of an attack on the situation.
Surgery then Radiation: This is what I am leaning towards. I don't know the possible complications involved in doing the surgery on the front of my neck, so I don't have a good opinion on what would happen with surgery. As it looks right now it would be just removing these two tumors, which should be relatively noninvasive. Obviously there is possible nerve damage and scaring, but it should be minimal. If they have to do another lymph node dissection then that's a different story. I haven't heard of any additional disease in the right side of neck so I don't see the reason for removing lymph nodes at this time. Also can you go without that many lymph nodes in one main area? Seems a bit crazy to me. After surgery there would be radiation and I have almost all of the listed above concerns. Also to add to the radiation concerns is I would have to go off of my systematic treatment while doing radiation treatment so that is always nerve wracking.
Injectable Treatments: Not on board. An injectable treatment is where they trigger treatment by injecting into the tumor directly, usually using a virus of some sort. It then trains your body to kill those type of cancer cells and begins acting like a vaccine for the rest of the body/tumors/cells. While this sounds good, it actually is poorly timed for my situation. These two tumors have shown they are molecularly different than my other tumors and they are growing while all the others are shrinking in response to my BRaf inhibitor treatment. So with that, the injectable would only treat this exact type of tumor instead of all of them. That is too risky to let them run wild while only focusing on two tumors.
Can only see one tumor here... but you can see just how odd my neck shape is after all the surgeries and treatments. Plus the radiation marker tattoo that looks like a black mole. Also note my dimple chin, beauty mark and "A" necklace that I've worn for 13+ years. 
I am eager to hear what my team suggests. But until then, and until I start whatever is next, I am feeling pretty good. This sinus infection is still lingering but isn't holding me back thankfully. I am trying to cram in as much as I can now since I am pretty sure I will be knocked down in the coming weeks. My trip to San Diego this weekend couldn't have been better timed and I am excited to just go and have a fun time. I am hoping that they clear me to have some cocktails... champagne brunch anyone?! My mind has been running wild lately (for many different reasons, not really on cancer bs) so I need to reset (again). The day before I go I am actually going to see a medium/spiritual counselor. Mediums, if you aren't familiar with them, speak to those who have passed on. I have been before but I had never had anyone close to me who had passed at that time. Now I have several so it should be interesting. I don't have any unanswered questions or messages for those people who have passed, but I just want to see if they come through. Maybe they have some insight. Maybe its all insane? I look at it as entertainment at the least, and take it all with a grain of salt so we shall see how it goes. I will definitely write about it though.

Also I know I have some new followers on here - so hello and thanks for following my journey through this madness! Hope my long-winded-ness doesn't bore you!

Hopefully I will be writing next about the decision on the next treatment (you know, treatment change #14, or is it #15. Lost count...)

Onward, one day at a time.
Good Ol' Snapchat Filters; guessing this is a baby bear? 

Hung my bird feeders this weekend! Hopefully I get lots and lots of hummingbirds!

Friday, May 12, 2017

No Decision, yet

One thing, among many, that I have learned from this whole cancer stuff is that nothing is certain or set in stone. In this case it's getting my mind set on what is next. I had been told they were thinking radiation as the next step. As I have stated many times, I despise radiation and really struggled with it so it took me a bit to get my mind on board that I would be facing that again. I went to my radiation consult and my doctor was not convinced it was the best option. She suggested surgery first and then radiation as it would spare the other things around the tumors and be less invasive. She wanted to present my case at tumor board again and see what the surgeons and general oncologist had to say about it all. I had my radiation simulation scheduled for later that day but was told that it was cancelled as they think I will be doing surgery or an injectable treatment. I also had a CT of my neck so that it was up to date as possible.

Tumor board was on Thursday (yesterday) when I was presented, And nothing was decided. All I know right now is that they are still deciding on what route I should go. For now it seems that radiation is on hold. When talking with my nurses it seems as though they do not feel like an injectable is a great route to go and would rather go with surgery/radiation or just radiation. For now I will stay on the treatment I am on (BRaf inhibitors) until they tell me otherwise. I know that my radiation oncologist is out of the country for 2 weeks so the attending is who I would be dealing with before she gets back. If I am just doing radiation then I will most likely not start until 3 weeks from now. Surgery wouldn't be until then either. My tumors on the front of my neck are still growing; no pain though.

I also have been off of the pain patch for almost 2 weeks now. I have had mild withdraw symptoms since taking it off, but no pain. This is a good sign that the treatment is working and that the bone mets are not increasing. I do get pains in my neck, mostly I'm sure from it overcompensating for the side that doesn't have the muscles to hold up my head. It also doesn't help that I have had a cold/sinus infection for the last week. Hoping to feel better soon.

In October I had to cancel a trip to San Diego, California because of my surgery and treatment. My friends have rebooked the trip and we are going in one week! I will not let anything cancel this trip, that is for sure. I am excited to just get away again. It is with a friend I have known since I was 5 years old. Him and his wife are so generous and are flying me out as well as doing hotel and air. I can't wait!

Today my mom came and planted all of my new vegetables (tomatoes, peppers, beets, carrots, squash, cantelope and a pumpkin) as well as a bunch of dahlias (my favorite flowers). I am hoping that it is a successful garden. I am gonna have to be diligent on the watering!

We will have to see what the doctors think up, until then I am laying low and trying to beat this cold. Early bed time for me.

A letter to my representatives

As many of us are faced with so many hard trials through life in general, let alone add in a stage IV cancer diagnosis, one thing you shouldn't be faced with is the possibility of losing your health coverage. Right now there are some dangerous bills floating around our government and it is important to share our stories so people know what they are voting on. I sent the following to my representatives in hopes to be heard and stop a dangerous change from happening. We shall see what happens. For now I know that I am covered for 2017. 
"I am a 34 year old Utah native and I have stage IV melanoma and have been fighting for 8 years. I've fought through being declined insurance by four insurance companies for preexisting conditions/high risk when that was legal; then I carried "catastrophic care" insurance until the Affordable Care Act was implemented.
My treatments are ever changing and prices range from $5k to $250k depending on what I have to do to keep fighting. I reached my deductible and out of pocket maximum on January 10th of this year.
With the new American Health Care Act I fear my life will be in jeopardy as I am a preexisting condition, and an expensive one at that. I will reach the maximum lifetime limit quickly and will literally have to choose between life and death possibly, due to a vote you will place that affects millions of lives.
Please put faces to your votes, not dollar signs, and show that you are an understanding and caring human that doesn't wish the worst on people.
My name is Alexis Waters and I choose to fight to live and I want you to fight to allow me that right. I didn't choose this battle but I want the choice of how I fight to be mine, not the governments."
If you don't speak up, you'll never be heard

Thursday, May 4, 2017

Little shits

I'm talking about my two new tumors on the front of my neck. Yep, two. They are small (one you can't even see but I can feel it) and they aren't growing fast. But they are growing. This means they aren't responding to the systemic treatment (BRaf Inhibitors) so we need to attack them in a different way. Sadly, that other way is radiation. I was told this was the next option over a week ago and it took me a bit to be alright with it and tell people. Tuesday is when we confirmed that that is the best option going forward. They did ask me what I thought (which they do with all treatments since I control the situation for the most part) and I said "you will never hear the words 'I want radiation' come out of my mouth, so this decision is on you to tell me I am doing it." My doctor said it was a no brainer decision from him as radiation worked on the other park of my neck (for the most part since only one small tumor remains) and having a break in the BRaf pills has actually proved to be more effective in the long term. In order to do radiation I need to be off of the BRaf and do what is called a "washout" which basically means time for it to leave my system, for me that is 7 days before and after radiation. I will find out Monday the plan for when to start radiation and stop the BRaf as well as how many treatments I will be getting. I also will be getting a new mask made and possibly more tattoo markers. They feel that I most likely will not get as many treatments as I did last time (20) and will probably get 5-10. If this is so, then my side effects should be much more mild in comparison. Doesn't hurt that I wont be doing chemo at the same time, like last time. My body will be able to stay stronger through this than it did before, or so I truly am hoping. Good hell I hate radiation though...
Pointing to the second tumor. The bump that looks like an Adams apple is a tumor as well

That said, I may be speaking to 7th and 8th graders about my radiation experiences in the coming weeks.  I have wanted to speak to younger kids about my melanoma in general but man it is a lot to tell! My friend is a science teacher and he suggested to narrow it down (and try and connect it to science) and so I figured radiation would be best and it has the most show and tell props (mask, burn pictures, tattoos, bald spots... you know the works!) I hope to do this in the next few weeks before school is out for the year. Better get my butt in gear!

My hair is growing super fast which is great. As of April 1st I decided to not wear a beanie/hat at all times and that seems like ages ago. I got some steps shaved in and those are pretty much out grown. I have taken a picture each Sunday since the new little hairs started to come in and now have 3 months worth of pictures and it is pretty amazing to see the change. Still holding out for curls though!
Life has gotten a bit more regular. I have had a good amount of daily energy where I don't require a nap each day. I also have had my appetite back and actually am tasting things again. It has been nice to have food that actually tastes how I think it should. It's been a long time coming for sure

I have been getting some things ready to plant in my yard and am excited to watch it all grow, going to plant them this week sometime now that the weather is warmer. I have been seeing a good amount of friends and enjoying feeling good again!
Me and tiny PipSqueek the baby goat

Monday, April 17, 2017

"So, what's next for you?"

I have gotten that questions about 5 times in the last day so I guess I need to clarify what exactly is next for me. 

In my last post I talked about scan results and the new tumor in my neck. Although this is new information it didn't change my treatment plan for now. I am still on the at home chemo which is the BRaf inhibitors. I take meds twice a day at home and don't go up to the hospital for treatment for now. We do monitor my blood work closely though - make sure my liver is behaving, my white count (nuetropenia levels) and my cancer growing marker (which is coming down thankfully.)

As of right now I have blood work this week and they will be discussing me at tumor board again this week. After that I have a follow-up/more blood work on May 2nd. 

I am still on the pain patch, though we are working on lowering the dose and moving to just breakthrough meds. My pain is very minimal now which has been nice. My fatigue has improved and I can make it through the day without a nap most days (though there is a lot of being lazy.) Eating has improved drastically over the last week so I hope to stabilize my weight and hopefully stop losing more weight. Never thought I would be wishing to stop losing weight... Cancer does strange things to you. 

Yesterday was Easter and I enjoyed a brunch with some friends and then a good family dinner. 

*you can see my new tumor poking out, basically looks like a small Adams apple

This is a picture of one of my favorite kids (well he is 18 now...) and on his lacrosse helmet he wore my initials. Pretty amazing guy. 
Tony Boutwell

Tuesday, April 11, 2017

Port Access

A lot of people ask how my port works so I decided to film it getting accessed and a blood draw. It doesn't hurt and is extremely simple and helpful. For anyone considering getting one, do it! Definitely one of the best decisions of my cancer fight that is for sure!

Link to YouTube video