Booster!

I decided to launch a booster tshirt campaign to help me relieve the financial burdens of life during treatment as well as bring some awareness to Melanoma.

To support me on this - and to get a cool #melafreakinoma shirt, go to booster.com/melafreakinoma and see what shirt you like best!

Thank you for all your support!

A preview of the shirts

One chemo and 3 radiation visits down...

Life has decided to see how much I can handle without fully losing it lately. And it has been a lot.

On top of moving into my own place (oh my, the unpacking is a disaster!) I had scans, appointments, the election, a tooth pulled, radiation consults, doctors appointments, radiation and chemo. 

Lets talk about scans and results. Scans now are definitely more stressful just because I know there is disease and so it isn't a matter of if there is it is a matter of if there is more. Sadly on these scans there is more. My neck is looking good after surgery but there is a slight shadow that they need to rule out. What they are ruling out is whether or not it has spread to my jaw bone. In order to determine this I will be having a bone scan on Monday. I am not showing any signs or symptoms that this is what is happening, but again, we have to rule it out. As for my lungs they are stable still, unchanged. My brain has grown and there is an additional lesion. So there are two brain tumors in there. Both are small enough and in positions that I shouldn't feel any symptoms from which is reassuring. Because I now have a second brain lesion insurance has approved my SRS brain radiation and we will be doing that in the next coming weeks. 

I went in to what I thought was just a trial run of radiation but ended up being actual treatment. There is a lot of lining up and measuring and such and then the actually radiation (if all goes as planned) is about 10 minutes. I have now had 3 of my 20 sessions. I can feel a little tightening in the skin and heat, so we shall see how the remaining sessions go.

You can see the impressions left on my forehead from the mask

Chemo was a long day as well but things have been good so far. I got there at 8:20 and drugs didn't start until 11:30. There are a lot of labs and pre-drugs you need to take before starting the actual chemo so things take a real long time. A lot of hurry up and wait. The chemo I am receiving is new for me and is called Carbo-Taxol, a combination of two drugs. It is a very common chemo combo (say that a few times fast) for many cancers so we have a good idea of what to expect. So far I have felt pretty good. I have been tired mostly and have some waves of nausea but it is all managable. Hair should be starting to fall out around the 30th I'm expecting, usually 20-21 days after infusion. Even though I know it is coming, I am not really ready for it. again. I know it will grow back, but it is just such a blow to my confidence regardless, no matter how positive you try and stay. I am happy though that it is going to be winter and I can wear warm beanies the whole time. 

Now to the election. I am proud to say that I voted for Hillary Clinton to be the next, and first female, president. I was so beyond excited that I got to vote for a female to run our nation and was also excited the polls weren't too chaotic when I went. Emotions were high for everyone - on both sides so the day was a little stressful. I wore a silly shirt (Timberlake/Fallon 2016)

 to lighten the mood which helped a bit. And then the polls started closing, and being called. And all you could see was red states/victories. Just like that I felt punched in the gut and America elected Donald Trump to be the president. I read the news when I rolled over in bed at 2:12 am and saw it was called and am surprised I was able to fall back asleep. In the morning it took a lot for me to get up and at 'em for my appointments as I just couldn't believe it. And then it hit me like a brick. I could be without health insurance sooner than later, all because of the person in office. I literally felt at that moment that he held my life in his hands. I have been beyond lucky to have not had to work full time or at all while fighting this fight and it is all due to the luxury of the Affordable Care Act (Obamacare) without it I was denied coverage for being a preexisting condition and I had to work in order to be covered at all. I just felt in that moment that I had been stripped of my right to fight this the way I want to fight it, to treat it as a full time job - kicking cancers ass. And so the tears came, and they didn't stop coming for a long while. I asked my doctors while they were telling me I may have bone lesions as well as additional brain lesions, what I will do if I lose my insurance? I know nothing happens overnight, but in that moment I felt less than, I felt like a target and in a sense a minority. I truly don't know the last time I cried that hard and for that long. As the dust has settled in the past 5 days since the election, emotions are still high and questions are still being asked. He has said he wouldn't appeal the entire law, and keep the preexisting conditions as a non-issue going forward, which is good. Still doesn't mean I am not still terrified for what is to come. I just know that I have to keep up my fight here and hope that it will be able to continue.

Things are finally getting settled in my new place and slowly there are less and less boxes to go through. I am still on the hunt for a couch but I have my bed and lounge chair so I am good for a bit. TV is up, just need to get the DVD player working and get some internet finally and we will be in business! My family and friends have been so great and helpful with everything, seriously would be a disaster if it weren't for them.

All things personal

Last post was all medical - this is all personal and fun things.

Since surgery I have felt very good overall which has been nice. I started to drive 12 days after surgery and that allowed me to be free to do what I like and go to the store and all those things. Went to a movie, went to my friends sons birthday party and did a wagon ride, dressed up for Halloween, went to the last summer farmers market at Wheeler Farm, took the boys (Ben and Jack) out trick or treating in my sisters neighborhood (which was really fun), turned 34, got the keys to my new place and have started to slowly move in.

Social Butterfly

My birthday usually is a big deal for me but with surgery and the whole no eating fat thing I kind of was a downer about it for a bit. I never realized how food centered a birthday is until I couldn't have anything fun! In the morning I met up with little Ruby, her mom Ali and her sister Jane for some acai bowls and healthier food. It was fun to be goofy with the girls and of course to see sweet Ali. You can read her blog here. Since I got the keys early (got them on the 1st and was planning on getting them on the 5th) I had some friends over to the empty place that night and just ordered pizza for them and such. It was a lot of fun to have everyone over to see it.

Look at this pretty cake my friends got me - even though I couldn't eat it until the next day. My wonderful friend Elise also went out of her way to make me a sans free birthday dessert - strawberry shortcake. It was delicious!

Since then I have been slowly moving things in and we have movers coming tomorrow to load up my storage unit. I'm a bit nervous to see what I have in there... some of the stuff has never been used so it will be like Christmas! I'm still deciding on what I am going to do with all my Sweet Janes stuff. I'm torn on it - want to keep it but also don't want to just store things to store things. I am also not sure I want to close that chapter all the way. We will see. I have until the 30th to have the storage unit completely cleaned out.

Besides moving I am going to try and do some fun things before life gets shaken up on the 10th. Not sure what, but definitely will do something each day not medical or moving.

One thing I want to acknowledge is that there is a saying that you never know your true friends until you have to ask them to help you move. Well, I am overly blessed in the true friend category. I have too many helpers! How is that possible? I sure do love my army.

All things medical

It has been three weeks since surgery and things are going pretty well. The scar is minimal and the swelling is still going down. I have had many people say they feel like it is much better than my last scar. Um, thanks? I knew it wasn't the pretties scar but I guess to have others tell you that is kinda weird. But regardless, it is healing very fast and looking good.

Now the drain...
I am not a fan of drains. It is a love hate situation. I know you need one and it is helpful and all but man they kinda suck and especially when they don't work how they are supposed to. Mine stopped draining accurately about 6/7 days in. A lot of the drainage wasn't going into the drain but was leaking out of the hole entering my scar. Gross I know, but I would say 25% was going into the drain, the rest into bandages/gauze's. By day 12 I was done with it and luckily the nurse pulled it. Lets just say it definitely wasn't working and was practically completely clogged. I was told to express the buildup liquid at home and so I did. And I filmed it. Yep, totally did. So if you like gross weird videos you can see it here: https://www.youtube.com/watch?v=C9wX0Ec7zRk I have had some redness in the last few days so I stopped in to have it checked today and they had to puncture it and drain it as well. I am on antibiotics and hopefully it will stop accumulating soon.

The white part is what was inside... crazy!

Just a bit special. Drain issues. 

Liver
My liver was really good - legitimately normal while I was in the hospital! So exciting! But... then spiked into the 200's again a week later. Now it is trending back down, without any additional meds. They assume it is from having anesthesia as well as some of the anti-nausea and pain meds given. I just have a super sensitive liver now and forever it seems.

Diet
Since they had to cut the bile ducts in my neck, I was put on a strict NO FAT diet. Yep, no fat. nada. Not even supposed to have a gram! The reason is because fat processes through those ducts and in order for them to heal fully there needs to be no fat circulating through. I.e. no fat. It was torture. So many things have fat in them, and the things that don't like vegetables are really hard for me to eat/chew still. It's was an adjustment to say the least. Best non-fat find to date? Grandma Sycamores WHITE BREAD! And delicious, foamy nonfat chai lattes. Today the doc gave me the go ahead to have fat! Pretty excited to say the least! I actually had a break in appointments after and him and I were getting lunch at the same time so I got to share my fat-full meal (blackened salmon salad) with him and get to know him a bit better which was nice.

I received the pathology report as well. There was 38 lymph nodes removed, 14 of which had melanoma in them. I guess the large "tumor" was a grouping of matted lymph nodes, not just one big tumor. And that "numerous lymph nodes are grossly positive with tumor." There is something about reading about what you have that makes it that much harder. Although I know it is real, it is that much more real when it is on paper in front of your face. Never fun.

Now on to the plan. I will be doing full radiation on my neck starting on November 10th. This will hopefully kill the remaining cells left behind after surgery (we knew going in that it was impossible to get clear margins/all the cells). Radiation will be  20 sessions. Radiation is done everyday, Monday - Friday. I am not sure yet how long each one takes but I would assume I will be up there for about 1-2 hours each time. Planning today went well and I feel alright going forward. They made my mask as well as gave me my first tattoos, three of them. They are little dots to mark where they need to line me up each time. One on each shoulder and one in the middle of my chest. Primal style with ink and a single needle.

The center of the "X" is where the tattoos are (not the full ink you see here)

I was also presented at tumor board again (yes, I am told I am a "frequent flyer" there) and because of the cancer being so aggressive I need to hit it from two ways, and the options for that is chemo. The name of the chemo drug is carbo-taxel and it is able to be given while you are doing radiation, unlike all the immunotherapies that are the other options. This is an 5 hour outpatient infusion chemo that is given every three weeks, up to 6 times, and I am starting that on November 10th as well. And yes it is a make you sick, lose your hair kind of chemo. Right when my hair was really taking on some character. To compare it to my other chemo regimen, this is 2 drugs where the biochemo was 5 drugs at once. I'm hoping I tolerate it well. I had my ugly cry about it and my restless nights (probably just the beginning of those) and now am pretty ok with it all. The timing just sucks, but when is there a good time to start chemo and radiation, or a good time for cancer? The answer is never.

Brain radiation is still in the works, that's about all the info I have on that. Hopefully will find out more soon.

New scans (CT and MRI) on Friday the 4th.

I learned yesterday that one of the people I would always bump in to up at Huntsman (his wife is the mom of some of my childhood friends) passed away from his stage IV lung cancer, diagnosed in May. So hard. Last time I saw him he was having a hard time overall and it just makes me sad to see how many people are affected by this damn disease. Oy.



Here's to treatment options 9 and 10!

Here is a recap:
Surgery #1, Biochemo, HF10/Ipi, BRaf #1 Mekinist/Tafinlar, BRaf #2 Zelboraf/Cotellic, Nivolumab/Ipi Combo, BRaf #1 again, Surgery #2. Now radiation and chemo.

Surgery

It has now been 4 days since surgery and I am attempting to type on my computer - so far so good but can tell it will be short lived.

With me for 4 major inpatient stays 

Right before surgery I had to have a quick CT scan so there was a bit of a shuffle which helped keep my mind off of things. I definitely was emotional though. My friends sent me some great things to keep me distracted though - pictures of puppies, videos of my favorite little guys and then of course Justin Timberlake. Before I knew it I was out, didn't even get to the counting down part! 

When I woke up I had this insane pain - in the heel of my foot! Like crazy pain, enough that I was kicking and screaming. Yes, screaming. I was relieved at that moment that I hadn't lost my ability to talk. But man my foot killed. It was most likely propped up at a weird angle for the 5 1/2 hr surgery and then once it moved and got blood flow it freaked out. Me screaming also meant that I was able to swallow as well. I then smiled and most of the smile works, just a bit of my lower lip is stunned and should hopefully come back. This happened with my last surgery and it took about 2 months to come back. Knowing that it will most likely come back makes it easier to accept.

Before surgery to compare

Before surgery to compare

WARNING - SCAR PICTURES BELOW!

Surgery went really really good. Dr. Monroe said he believes he got every tumor out as well as any affected lymph nodes. He dissected the old scar as well and was able to keep the new scar minimal. I made him take a picture of the tumors and show me them when I was awake - pretty insane. He was emailing them to me but somehow that got messed up. I hope to get them tomorrow to post. It was pretty interesting as some of the lymph nodes and tumors are black while the others were not. That's the melanoma in them. The scar is larger but the sutures/stitches are tighter so I am thinking it will heal even better than my last one. I have a drain that is working pretty well, having some minor issues with it but nothing too big.

Day One - right after surgery

Day One - right after surgery

Day Two - still in the hospital

I was in the hospital for 2 nights and now have been home for 2 nights. My oxygen level tends to drop when I sleep while on pain meds so we decided I should have supplemental oxygen at home for when I am asleep. It isn't too bad, I just hope it isn't a permanent thing.

Day Three - At home after a shower

Day Three - at home, after a shower

The pain isn't too intense - it is there for sure, but not what I had expected. There is a lot of surface skin nerve damage so I am not sure I am truly feeling all the pain that I am actually having, which is one benefit to nerve damage. I have been keeping up on a schedule for my pain meds and things haven't been too rough. I have some limited range of motion but I feel a lot of that is swelling and we can work on it to improve it. Swelling has been the worst the last two days so I have been trying to drink as much water as I can and move as much as my energy will allow - which hasn't been much. I have been sleeping a ton. I know you heal when you sleep so that makes sense, but man I'm exhausted.

This came in handy for my new diet! Just no chocolate dipped ones for me this time

They had to cut one of the bile ducts in that area that regulates fat in your blood stream so because of that I am on a NO fat diet. Like zero fat, nada. Not so easy to do when you can't chew much since most of the fat free (natural) things are vegetables. We are finding recipes and tricks though and for now the nonfat yogurt, cereal, milk and fruits have done ok. Basically on a dairy diet. Like I said, we are working on it.

And this note made me chuckle

And that is about all I can handle of holding up my arm to type, but I feel like I did a pretty good job! 

Surgery Day

Today is the day, surgery.

I have been blocking out what is ahead of me for a bit. Sure I have talked about it and shared the possible outcomes but I have been making my mind think that the day may not really come, that the surgeon will reschedule or that some miraculous thing happened and they began to shrink on their own. Of course none of these things happened, but we are here. I have 20 minutes until I have to leave the house. Things have gotten real!

Today is the last day I will have these tumors that I have gotten so used to for 15+ months. Not that I want to keep them,I just don't really remember what it is like to not have them as a constant thing to focus on. And who would think that I would be worried about missing my giant scar? It is going to be replaced by another giant scar, just more giant-er.

My hopes for today are that things go smoothly and that there is minimal nerve damage and permanent issues. I hope that the scar is as minimal as it can be, considering. I hope to wake up and be able to smile and move my facial muscles. I hope to wake up and be able to swallow on my own. I hope to wake up without nerve pain (just pain from the surgery). I hope to wake up to good news and not bad. Lots of hopes.

For now I am going to try and focus and get the final things ready for this big, life changing moment. My phone is blowing up with messages of love and encouragement. This is what keeps me going and staying positive and being brave.

Here we go.

Escaping to California

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

Adventures of Ash and Lex

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

Ash and I

Waiting in line Selfies

too late..,

Dumbo!

We wore them out...

The best people watching Happiest Place on Earth

You're never too old for Minnie ears

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

Good ol' Dre

One of my favorite things - toes in the sand

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

 

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

Silly face selfies. So dang cute.