Stage IV Realness - Surgery is Scheduled

Yesterday was a hard day. A hard day I wasn’t anticipating. I had my surgery consult to remove the tumors in my neck. I went in expecting a repeat of the surgery I had in February 2015 but this one is much more involved.

This time they will be doing another radical neck dissection and extending the current scar up behind my ear and a bit outward onto the scalp as well as extending the scar across the front of my neck. This will give them access to all the current tumors, around 6. The surgery is a long one and is much more involved than the first. I don’t really want to go into many details, but it is going to be rough. (If you truly want to know more I am happy to answer any questions you have) I will stay at the hospital for at least two days and then head home after to recoup. After I am healed to their liking we will start radiation; I assume about 4 weeks after surgery. And hopefully get my brain radiation then too. The goal is to remove the bulk of the tumors (it is impossible to remove all of them due to the intricate nerves and veins they are surrounding as well as the tumors are in tissue so the edges aren't clearly defined) and once the bulk is removed then hit it with radiation to hopefully kill the remaining cells. Radiation works better on a cellular level and not a bulk level, so it gives better chance at me killing the most cancer cells possible. 

Surgery is October 12^th. So basically I have just under 3 weeks to live it up before things get really real. I was sad to have to cancel a lot of things that I had already planned (two trips!), hopefully not letting down too many people and they understand the circumstances. They said I’d be down for about 6 weeks.

The hard part about yesterday was that reality slapped me in the face. I really, truly do have stage IV cancer and it gets scary. Decisions are hard and carry so much weight. Treatments are harder, more involved. I no longer have multiple options to choose from as far as treatments go. Things are getting more and more real, and the alternatives are just what you fear – end of life. As much as I do not want to have these tumors, this surgery will be a life changer for sure. The alternative is to just let them grow and then run its course through my body. There are some more systemic treatments available but my track record shows that these f’rs don’t respond to much and when they do they decide to stop responding at some point. Let’s not forget that my neck tumors started growing during biochemo – they are stubborn, painful, ugly shits.

As for the next 20 days I am going to do all that I can to enjoy myself. I am working on getting to California to see my best friend and put my feet in the ocean and maybe head to Disneyland. I am going to see my friends, eat lots of deliciousness, get ready to move into my own place at the end of October, work a little (it keeps me kinda sane) and just truly enjoy myself. I will have plenty of down time coming up that I can binge watch to my heart’s content. 

February 24

February 24th has some history to it. It has been the day of my surgeries, two of them. First was my first lymph node removal as well as my MOHS surgery on my primary melanoma 7 years ago. And then last year for my radical neck dissection where 37 lymph nodes were removed, 7 of which were positive for melanoma as well as the surrounding tissue. When they took off the bandage last year and I saw my new neck for the first time I was in complete and utter shock. The scar was so much bigger and crazier than I had prepared myself for. I had a drain as well which was interesting in its own right. I was sad that I no longer had a "normal" neck and that I will forever have this as a sign of what has happened to me. There are still moments when I am shocked at what has happened to me overall, but then I realize just how amazing my body is to have endured what it has endured and to have healed as well as it has. My new neck gets looks and I get asked questions often about it, but I am owning my story now - something I wasn't sure would happen when I first saw it a year ago. Scars show where we have been and that what we were faced with didn't conquer us. Some scars are bigger than others but all tell a story. I have thought I needed a big, elaborate and made up story to go along with my scar. Maybe that I got attacked by platypus' or some rogue stabbing but I am realizing my story is plenty crazy in its own right. I have realized that me telling my story behind my scar helps to bring awareness to melanoma and begin a conversation that most people are confused about - it isn't "just" skin cancer and it isn't just as easy as removing a mole (but I do know that this is the case for some, just not all.)

Looking back on peoples calls, texts, posts and emails they sent me a year ago today really makes me remember how many people are with me in this crazy fight. They were behind me 100% then and they are behind me 100% now. I have already beat some statistics by still fighting this battle a year in, I plan to beat the statistics all the way to the end!

I am excited to tell my scar stories for years to come.

Side by side scar comparison

Left: 2/24/15

Right: 2/24/16

2/24/16

Melanoma Monday

Today kicks off Melanoma awareness month with Melanoma Monday. Check your body, make an appointment, wear sunscreen, cover up and be smart. #melanomaawareness #melafuckinoma #melanomamonday

Paper Chain for the win!

An amazing paper chain all the way from NY with amazing messages on them, as you can see. I now have two great chains so count down this journey. Thanks @emilyblythe it’s great. 
Also can’t go without thanking @samanthabrynne for her amazing chain as well. My room is decorated amazingly now! Love both you ladies to the moon. #paperchain #Melafuckinoma #cancersucks but #myarmy helps me through it. 💜

Hump day

I am officially more than half way done with my first round of biochemo! I have finished 7 of the 9 bags of the chemo drugs ans just have a couple more bags/injections of the immunotherapy drugs. 

I have been tolerating things pretty well, and my doctor and nurses even threw out the word “rockstar.” this makes me feel good. It has been rough but not as rough as I had thought it would be, thankfully. I have mostly been dealing with nauseousness, fatigue and fevers. All of these things are easily controlled so they don’t last too long. 

I am excited to get home to my own bed to sleep but not so excited to do this all two more times. But I have to do what I have to do. The staff has been beyond amazing and caring and it truly makes such a difference. 

Now off go bed.. I barely make it to 9pm! 

Signing off...

Today was a very long and overwhelming day (as if I haven’t had enough of those in this battle..) Today I met with a radiation oncologist as well as a new general/melanoma oncologist to decide on treatment going forward. This day has been in my mind for weeks, literally 3, and it just hit me harder than I expected. I knew things would have to be decided soon, but it is still a lot more intense when you are in back to back appointments from 9am-2pm and being bombarded with so much information about what you are about to willingly agree to do. Then at the end of it they hand you a paper and ask you to sign in agreement and I literally cried as I signed the paper that basically will change my life as I know it from here on out. These days are now known as my BC days (before chemo).

Things are starting fast.. as in 6 days. The room requests and insurance paper work is filed. Additional tests scheduled. And now the timeline has begun. I was pretty certain that it would still be an additional week before starting but was caught off guard when they date of April 6th was announced. So Monday it is. 

How do you even get ready for such a thing.. I have read more blogs about things and I don’t know if I will continue to read them going forward. I think I will just look up any question I have as it comes up and will try my best to enjoy the moments of this week before my treatment begins. 

Although there aren’t many great things to look forward to when you think of chemo, there were some positive things that I was happy to hear today. One of them being that my hair most likely will not fall out but just thin. I had been planning to do a hair cutting party before starting and donate my hair as I figure if it was going to disappear anyway that it should go to a good cause instead of just fall out. I still will consider this option if it begins to thin drastically. My doctor suggested to see how this round treats me and not do anything drastic right now. Secondly, I was informed that my restrictions as far as dealing with my compromised immune system are not as severe as I had read about and will just need to be cautious but can still enjoy going out in public and seeing people, as long as they are not sick or have been around sick people/kids. I will probably still avoid many public situations for the safety of things, it is nice to know that I wont have to just be a shut in. Same goes for food options, where I felt there were more limitations there aren’t as many and I basically have the same as a pregnant woman. 

Something that popped in my head today as I was driving was that I endured almost 3 months of pain and issues with my back surgery and that was when I thought it was only going to be 4-6 weeks of issues so I can handle and make it through 9+ weeks of biochemo and feeling terrible. Or at least that is what I am trying to tell myself. 9 weeks go by so fast and so I’m hoping this case isn’t any different. 

I have a feeling these next 5 days will speed past. I was going to go on a mini vacation but now think it is just too overwhelming and stressful sadly to go. The travel time will be a 1/3 of the vacation time and I just don’t think it will be good right now. I am still deciding though. I’m completely torn. As for now I’m going to rest up for my next two days of 3 appointments/scans per day and try not to stay awake stressing about things I can’t change. 

One day at a time. One minute at a time…

Battle Wound

3 weeks ago I had surgery to remove all the lymph nodes on the left side of my neck, 37 total due to stage 3c melanoma. I went back and forth on whether or not to share a picture of the aftermath but decided that people needed to see what Melanoma was capable of. This is not “just” skin cancer, this is cancer. This scar is 6 ½" long and something I will have to learn to embrace over time. My second journey with melanoma has only just begun and it is only through the continued support from my army of friends and family that I know I will come out on top, but not without a fight. 💜 #melanoma #stage3c #cancer #Melafuckinoma #myarmy

The C Word

I have realized in the past 2+ months that a day hasn’t gone by without saying the word cancer. It has been in the past week that I have been bombarded with cancer talk and everything you could imagine cancer. Because of my scar that isn’t very easily masked, I have been asked about it almost every time I’ve been out in public, thus going into the script of “I have cancer… Melanoma… Yes, it is a skin cancer… Yes it can be on the inside… Yes, it actually is one of the fastest spreading and most deadly cancers there is… Yes, it’s true… Yes, it started on the outside 6 years ago.” I’m basically a walking billboard for Melanoma and skin cancer awareness, or awakening.  

Yesterday it just kind of hit me that I will not be escaping the constant reminder or cancer. I went to get my oil changed yesterday and when I was waiting for my friend to pick me up there was an entire segment on a local news station about skin cancer and sun safety. When I came back to pick it up, there was an extended commercial for melanoma and treatment advances at Huntsman on. When I came home to catch up on my DVR, each show I watched had a cancer theme for that episode, lucky me!

The reality is cancer is literally everywhere. It will eventually touch each and every person, somehow or someway. I have to accept that I will probably be followed around by the C word for years and decades to come, something I will have to learn to embrace and wear with pride.  For now I think I just want a couple days where I would like to forget that I am facing the battle of and for my life. 

At least it isn’t the other C word that is following me around.

One day at a time. 

One Day at a Time

Hello to my amazing supportive army. Tuesday was the big day of surgery, and big is a good way to describe it. The surgery removed 30+ lymph nodes (not the 5 I had in my mind) from the left side of my neck. Due to the previous surgery/scar as well as the size of the tumor the surgery took much longer than anticipated. The surgery lasted 5 ½ hours but was successful. Doctors feel very confident that they removed the tumor and lymph nodes in their entirety.  I stayed overnight at Huntsman Cancer Institute the night of my surgery and they treated me very well. The room was incredible, with an amazing view.  Nicer than some hotels I’ve stayed in. Even though it was extremely nice, I was happy to head to my parents to recoup.

I am staying at my parents until I feel comfortable on my own and have the pain under control. I have a drain in place so I think once that is out I will feel better being on my own. My family has been great through it all, adjusting to having me back in the house.

The pathology of the 30+ nodes will hopefully be complete within the week and I have an appointment with an oncologist on Wednesday to map out what the rest of my treatment will look like. Right now my doctor isn’t thinking that radiation is in the cards, but that immunotherapy will most likely be our best option. I will know more on Wednesday.

I won’t lie, the last few days have been extremely rough and emotionally taxing. I am very swollen and sore, and the drain is a very painful and a gross necessity. I think that all the stress and fear of the last 2 months finally set in when the reality of the pain sunk in.  The scar is very large, as you can see, so that will take some time to heal and get used to. Due to how “stuck” the tumor/node was and was entangled by nerves, I have some nerve damage that will hopefully diminish in the next few months. One of them being the nerve to my bottom lip. I look as though I just was at the dentist. They said that the nerve just needs time to recoup and will almost always return to normal – something I hope to be true.

Through it all I have been spoiled by love, energy, prayers, texts, emails, calls, gifts, food and flowers. All which have helped to keep my head up through it all. Not sure what I would do without all of you. My GoFundMe account reached the goal of $5000 and it is still rising. Just amazing to see everyone pull together for me, and it is so humbling to see people from all aspects of my life chip in and wish me good luck on this insane journey.

I will try my best to keep this updated.  I am nervous and anxious that this journey has begun but I am glad that the main step is behind me. On to the next step..

Love you all

Lex

At the edge of the next battle...

Tomorrow is the day. Tuesday February 24th to be exact. I have said those words so many times in the last two weeks that I didn’t really think they would actually be a real thing and actually arrive. But here I am, prepping to start this journey tomorrow. Tomorrow is when it all begins, where this next chapter in my life starts. 

How many people can say that they know the moment that things will all be different? It is a strange feeling. Tomorrow I go in for surgery to remove the remaining lymph nodes on the left side of my neck, anywhere from 20-60 of them. Metastatic Melanoma has struck one for sure and it has grown to be over 2cm around.. pretty much an inch. After two biopsies and endless feeling of it, it has started to be visable and has become tender. I feel my body is becoming aware of what is inside and is starting to do something… lets just hope that something isn’t to spread. 

For almost 6 weeks now I have known my cancer has returned and for the most part have suppressed any major meltdowns, given the handful of minor breakdowns. I have been called strong and brave more times than I can even understand and I don’t know if I would consider myself these things. I think I just am taking things one day at a time and just am doing what I have to so I can move on to the things I want to. I have somehow learned to focus on the big picture and try to not stress the smaller details so that a better result may come of it. I will say that I can’t shake the thought of the worst case scenario though, as much as I have tried to avoid it. For some reason my mind can block out many details of this whole situation but can’t block out that. 

As for tomorrow I am going to be taking it second by second. I will take with me the names of each and every person who has offered their love and support for me since letting them in on my journey. My army is giant and it is strong. It is because of them that I will get through this next step.. 

Now to attempt to sleep a bit before it all… 

Some random things…

Surgery this time is the EXACT day and date of my last one 6 years ago, Tuesday February 24th. 

The time 11:11 has haunted me these past few days

I had 2 deja vu’s in the past few days, and that is how I feel I am on the right path

I have ate more food in the past 5 weeks than anyone should. Can’t fight cancer hungry!

I am more worried about my back getting injured in surgery than I am about the actual procedure they are doing.. 

Here goes nothing… on to the next battle we go!