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. 

LaterBlog: September 29-October 2

Three days doesn't seem like much but man did I cram a lot of stuff into those days!

September 29th was the Huntsman Cancer Institute Gala that I attended. I was invited by a friend of a good friend who works there. This is an annual gala hosted for Huntsman donors, staff and some patients. Afterwards there is a party for cancer patients, caregivers and family called "Take a Night Off of Cancer." I had attended the after party last year and had a great time. This year I was lucky to enjoy the program and dinner before, as well as look at the auction items. The one I wanted (two tickets to see the Ellen Degeneres Show) went for $4k+ so that didn't work haha! I will get there one day! In the program one of my doctors work was mentioned (Dr. Robert Andtbacka and his work to get TVEC approved) and he was in multiple pictures. I felt like a super fan the whole time! I didn't stay long at the afterparty this year but it was set up beautifully.

October 1st was a full day!
I started the day attending the AIM Melanoma Summit at Huntsman where both my oncologists (Grossmann and Andtbacka) spoke as well as some other doctors. There was also a patient panel that was very interesting and informative. I even scored a picture with my lovely doctors.

Owe these two a lot. Dr. Robert Andtbacka (left) and Dr. Kenneth Grossmann (right)

List of the drug approvals over the last 35 years... I've done all but 2 of these (Pembro and TVEC)

That night my sister, Tyler and I took a mini road trip to see the Spiral Jetty at the Great Salt Lake. We stopped on the way at a iconic drive in and then headed out to the Jetty. The roads weren't what we expected and weren't really fully paved but more a grated dirt road at times. Very crazy, and bumpy. When we got there it was almost sunset so we headed down to the Jetty and were told to walk to the water as it was beautiful and worth seeing. Growing up near the Great Salt Lake we would go on field trips as a kid and all I remember is how stinky and gross it was. Not the case at this part of the lake. It was amazing. We were basically walking on inches and inches of packed salt that looked like an ice rink and you felt like it should crack beneath you but it didn't budge! Once we got to the water we were amazed to see it was pink. Yes - pink! I asked if this is where unicorns live because it is that unbelievable. The pictures don't do it justice. On top of just being cool and beautiful it was sunset so we got the best of everything. Can't believe it has taken me so long to make the trek out there!

Spiral Jetty

Both trying to get a good panoramic picture, circling one another

Salt Flats

Nope, not ugly.

Crazy wind hair (and expression)

Pink Water

Tylers jump picture

October 2: High Tea and Dinner with Friends
I went to high tea with a close friend and that sure was fun! It makes you feel so fancy. It was a good time chatting and catching up while eating finger sandwiches and drinking tasty tea. I'd love to go back with some of my friends little girls and just watch them enjoy every second of it!
That night I went to Tylers where he cooked a delicious meal for me and two friends. He sure spoils me! Homemade rolls and everything. There was an awesome thunder and lighting storm that night too and he lives on the top floor of his building so we had a great view of it thrashing around. Very cool.

High Tea at the Grand America

It was a full and fun weekend .. sure love my people.

Brain and Liver Update

I can't believe I didn't do a blog on this already... I'm a bit scatter brained lately. Guess we can pretend it is the brain tumor but after finding out it is SMALLER it is not as likely. Yes, it is smaller! In one month it went from 6mm to 5mm. This is very good because it wasn't thought that the meds would reach my brain lesion so to have it shrink in a month is impressive. My doctor was shocked it had shrank so much without radiation. That said, we are still pursuing the SRS radiation. The hope is to do it after my surgery is done and I have healed a bit. Hopefully in the next month.

My liver is down even more as well! Both are only 10-20 points about the average numbers. It was a good appointment for sure. They are having me stop the meds (as of two days ago) to see if the numbers continue to stay down. I will find out tomorrow (or the next day) whether or not they are still down. If they are still down then I can stay off of the CellCept (liver med) and just monitor the levels.

I really like when appointments have only good news in them, I could get used to that!

Cramming in the fun

It's been a good week. After the emotional roller coaster of a day last week, I started to move forward and continue on with things. I cancelled all I needed to cancel for the upcoming weeks and booked a trip to California to see my best friend and ocean. One of my close friends got married and we had a great time at the celebration. It was held at the Leonardo which used to be the old library. My grandpa was the commissioner when it was built so there is a plaque with his name on it. I always think it is cool to see. The Leo has an exhibit called "Flight" right now so there is literally an old airplane inside. It is pretty amazing. There are also all sorts of flying things too - hard to explain. It was really great to see all the developments in flying that I take for granted! 

   

I also saw my friend run up a ski jump. Yep, ski jump. It is the Red Bull 400. You gain 500ft in elevation in 400 meters. It is insane! And of course he is amazing at incline running so he placed first in his division and second overall by just milliseconds. I just watch in awe as all the heats continued on. They are crazy but good on 'em! 

I have been working a bit this week too. Trying to get some money before being laid up for a bit. It feels good to have some purpose in the day. Sometimes not. ;)

Mumford and Sons were in town this week and I have been looking forward to this show for a long time. Things didn't go as planned and I sat in my car and listened to the concert, I know that sounds super depressing and sad but it was actually nice! I've been laughing about it all week. It made it so I could listen to the first presidential debates as well as the concert AND I didn't get stuck in the traffic after the concert was over. In and out! Ahh, my life is a bit special. 

Tonight I am headed to a gala for cancer with Huntsman Cancer Institute. It is the annual "Take a night off of cancer" party so they have some inspirational speakers and dinner before the party. I am lucky enough to get to be a part of the gala because of my good friend who works for Huntsman. It is always fun to get dressed up and go out and about. I'll update this when I get some pictures from it. 

Surgery is now under two weeks away although it feels like it is coming up faster than that. Although I have kept myself busy, the worry of what life will be like after the surgery still creeps in. I have joked about things being referred to as BC (before cancer) and AC (meaning after I found out I had cancer) but now I need to figure out what to say in regards to this milestone. AS(s) haha. I think I'm really funny by the way... 

I am trying my best to be in the moment and not worry about what is to come. Easier said than done, but working on it. 

I have a lot of things jammed into the next two weeks, especially a lot of eating since that will likely be limited after surgery and with radiation. Enjoying what I can now! Oh and I have an MRI tomorrow to see how my brain tumor is doing. Really hoping that it is smaller. I haven't had as many headaches. Have been having a good amount of nerve pain though... let's hope that surgery takes care of most of that! 

Off to the gala I go...

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.