Hello, 2017

Goodbye crazy 2016 and hello 2017, may you treat us well!

Usually on New Years I like to look back at the year at all the good that has happened and lately so much craziness has been going on in the world that it is hard to look through that fog and see the good in the dark. That said, I still know there was so many good things to be happy about for 2016 as there was to be upset about.

My year was once again consumed with being cancer Alexis, not how I'd like to always be, but sometimes you need to commit yourself fully to something to get rid of it. I know I am not rid of my cancer, and it in fact is worse than it was last year, but I know I have given it all I have and don't plan on quitting anytime soon. I have done 8 different treatment options in 2016 alone, including surgery, brain radiation, neck radiation and BRaf inhibitors multiple times. I have been hospitalized for drug induced hepatitis (liver issues) three times, went to the ER three times for all different reasons, hospitalized for nuetropenic fevers and then infection one week later. I had to have a feeding tube that I threw up twice. I got a port placed and it was the best thing I've done. I had a liver biopsy. I had a weird breathing treatment. I have two creepy radiation masks of my face/head. Got three radiation tattoos across my shoulders/chest that will be there forever. I gained 40lbs from a 4 month high steroid treatment regimen, to only drop down to my lowest weight in years due to chemo and radiation. I have had to force myself to eat and realized the amount we take tasting for granted. I have mucousitis. I have drug induced hypothyroidism. I have come accustomed to giving myself blood thinner shots twice a day. I had a 6" x 6" tumor mass/cluster removed from my neck. Received 2nd and 3rd degree burns from intense radiation to my neck and head. I lost all my hair a second time this year. I lost a good friend to this crazy cancer and it lingers in my head daily that I am still here and she is not. I have learned that cancer is my job for now and it will stay that way until I am NED (no evidence of disease) or don't have a choice.

Personally life was really pretty great this year. I traveled when I could, headed to California, Bear Lake and then traveled around to things in Utah that I had never made the time to see like the Spiral Jetty, Peach Days, Snowbird and Eden Balloon Fest. I went boating. I saw the Dhali Llama and got a creeper picture with him (he didn't know though...) Saw some great friends get married. Celebrated the 4th and 24th of July, Halloween and New Years. I worked when I could for a company that has been more than flexible with me and I'm beyond grateful. I finally am in my own place and have all my things in one place and no more storage unit. I had my best friend some in and surprise me from out of town multiple times because she knew I needed her. I entertained the idea of dating even if the other person didn't have any idea that's what was happening - can we say friend zone? I need to work on that... I reconnected with some friends from years past and they have been some of the most beneficial friendships through this all. I met my mini melanoma soul mate Ruby and am so happy she is still fighting on without even realizing she's fighting. Also becoming good friends with her Momma has been a blessing in itself. I had people spoil me and support me and walk with me and send letters and cards and presents and elf deliveries and a couch delivery and just so many things!

All the ups were met with their downs that's for sure. I lost some amazing pet friends as well as some great acquaintances.

For 2017 I want to live in the moment and, not to be morbid, but I want to just live. I want to make it to next New Years feeling better than I feel today. I want to gain strength every day - mental and physical. I want to still be the Alexis that just stops by to say hi cause I was in the neighborhood or sends you a text because you popped into my head - even though I know people think that's odd. I thrive on connection and want to have more of that with those in my life. There are too many days that I feel so lonely yet am surrounded by so much love. I hope to change that feeling and build up my core support group so they can hear me even when I'm quiet. I don't want what 2017's negative potential to make me hard and cold. I want to hold out hope that there is still good in all people. I want to be unapologetic-ally nice to those around me and still find the positive in all the things I can. I want to spend more time building traditions and experiences and adventures with those I care about and not have to apologize for who I am. I want to show people what #stageIVlivin is all about so they can hopefully live their lives more fully.

2017, I hold out hope for you. I want to believe you will be kind to me if I am kind in return. So, bring it on 2017.

My New Years Cards

Couldn't resist these glasses

My New Years crew for years now

Gubby and my 10th New Years together! <3

Liver ... I need you to work with me!

The liver saga continues!

I got the liver biopsy results today and it showed drug related inflammation and the same characteristics of autoimmune hepatitis. As not fun as that sounds, it is actually better for me for the moment. Because it shows the same properties as a compromised, damaged liver I am ok to start a drug that is usually used for liver transplant patients. This drug is called CellCept. I can also start tapering off, yes off, of the prednisone (steroids) that I dislike so much. The goal is to get me off of the steroids for a couple reasons, one being the long term effects are large and the general side effects are a lot to deal with (if you haven't noticed...) and the second and main reason is that I can not start a new systemic cancer treatment while on steroids. If everything goes well I will be down to 5mg or off completely in 3-4 weeks. Goodbye chipmunk cheeks, extra water weight, irritability, ravenous eating, shaking hands/body and sleepless nights! 

I also had my liver levels checked today and sadly they are elevated even more than I was when they admitted me two weeks ago, in the 700's. Thankfully they agreed that I could monitor from home and not be admitted to just sit in the hospital. I was worried that they were high again because I have been extremely tired the last few days and extra itchy (one of the signs that my bilirubin is higher than usual but I don't have any yellow discoloration). I don't have the normal symptoms of an elevated/pissed off liver like dark urine, yellow skin or eyes. If I start to see these things then I will go in, but even when I was at 1200 I didn't have these symptoms so I don't think it will be a problem. I am just happy to not be sitting in the hospital writing this! 

I will start these meds as soon as my pharmacy fills them - most likely Thursday morning (day after tomorrow) I am hoping that the side effects aren't too intense and are easier to deal with than the steroids. We shall see. 

So liver, I need you to work with me! Please tolerate and respond to this new med so I can move forward in treatment and not waste anymore valuable time. Just being off of a treatment for two weeks my tumors in my neck have started to grow. Who knows what is happening in my brain and lungs. I try not to think about it. Still no symptoms from those areas so I am hoping to keep it that way. 

Liver Biopsy Today

Today is when I get my liver biopsy - and I'm not looking forward to it in the slightest.

I am hoping it is going to be fast and that I will have some sedatives.. I know they don't put you out but I don't respond to the conscious sedation well so we shall see.

This biopsy will help determine what is going on with my liver and hopefully give us some answers as to why it continues to stay elevated as well as why it isn't tolerating any drug/treatment we have been trying. The doctors said that it is acting as if I have autoimmune hepatitis but that I am not testing positive for it, so hopefully a closer look at the cells and such will give a better idea of what is happening.

After they look at the biopsy they will decide if I should go on a liver med or just continue the steroids. Ideally I will come off the steroids and the liver med will regulate my liver enough that I can start a new treatment and continue fighting the cancer. As of right now I am not on any treatment and can not start a new one if I am on steroids. We really need my liver to start shaping up!

As of three days ago my liver numbers were trending down but still high, about 8-9x the normal. They will check them again today I believe and we should see what they are doing.

Here's hoping it is a fast biopsy!


***Update***
Biopsy went well. It wasn't nearly as bad as I had anticipated which was a huge relief. They gave me mild sedation, which actually worked, so I wasn't too anxious as it was happening. The pain wasn't bad either. I think the hardest part was having to lay on my stomach for 3 hours after the biopsy to help stop bleeding.

Also I wanted to make sure everyone knows that they are not doing this biopsy to look for cancer - they are looking for reasons why the liver is freaking out when I am on treatments.

We should have the results by Monday

Stage IV

What I have fought so hard for 7.5 years to avoid is now a reality – I am stage IV. 

I had scans early last month and the results weren’t good. The cancer has spread past my neck. I have a small tumor (4mm) in my brain and around 10 even smaller ones in my lungs.

Right now we are going to put our focus on the brain lesion and treat that with a one-time blast of radiation called stereotactic radiosurgery (SRS). This won’t happen for another week, most likely two, and I shouldn’t have too bad of side effects from it – fatigue mostly it looks like. The lung lesions are most likely undetectable now with the treatment I am on, but we won’t know for sure until the next scans which will be in another 4-6 weeks.

I also had an appointment today to go over the next steps (radiation, treatments, etc.) and to check my liver. Well, sadly my liver has spiked again and I am admitted to Huntsman once again for observation. For some reason my liver is not tolerating any treatment I am on so they are bringing on the hematology/liver team to hopefully figure it all out. For now, we have just thrown a lot of steroids at the liver and it worked for the most part but isn’t a long term solution (and my sanity and puffy cheeks need a break from them!) and we need to have my liver tolerate the cancer drugs. I feel so silly being in the hospital when I feel just fine but they are worried that the liver levels are going to continue to increase over the next 24 hours so they need to have me under observation (and some more steroids for the time being.) I will be here for at least a day they are thinking.

I have NO symptoms or side effects from either. No pain, no issues. I wouldn’t know they were there unless I had scans. 

I have known since July 17th, so I have been sitting in the information and just processing things. I didn't want to post anything until I knew more details and I also wanted to enjoy the things I had already planned without being the center of attention and focus. I also didn't want it to be real, and once it is posted, it definitely is real. Thank you for understanding why I held on to the news for as long as I have.

This news isn't fun for anyone. It is the type of news that makes your best friend get in her car the next day and drive from California to see you and be here for you. It is news that you try and wrap your head around and realize that really will never happen. 

What I do know is that this news wont stop me from living my life and carrying on. I wont put things on hold because of this change, I will keep on keeping on. Making plans as I can. Obviously priorities will change and re-position, but in a good way. Probably how they always should have been, Basically everything changes while nothing changes. 

Staycation

I spent the week up at Snowbird, a ski resort that is open in the summer with activities and such. My best friends own a week long timeshare there and are so gracious to allow me to crash with them for the forth year in a row. Every year it has been so different as so much changes in a year.

It is so great to just escape the valley and heat and reality to a serene beautiful mountain where you can just zone out, go swimming, watch for animals or just hang in the room.

Top of the tram at Hidden Peak - 11,000ft; Salt Lake Valley straight ahead (Top), Heber (Bottom)

Jack is snorkling his heart out in this picture right above my feet

Morning routine

The view outside the room

As the week approached I didn't know how I would feel or where I would be in treatment. Orignially when I was on the Niv/Ipi combo I was scheduled to get my infusion half way through the week so in my head I was going to only be there for a few days. Obviously that has changed and I was able to stay the whole time - not sure they were truly expecting that but I did it! I only had a couple days and moments that I struggled but was able to pull through it. I used the spa pool and solarium a couple times and just relaxed and thought through things. My friends are crazy busy and have multiple small business constantly going so they had to come down to the valley almost everyday so I used that time to just relax and recoup. It was fun to watch their two boys enjoy their time on the rides and just be boys. They are getting so big and becoming their own little beings. It is fun to watch and just live in their simplicity.

Tell Jack what a selfie is...  

Ben and Anton in the room hottub loving life! 

  

Popsicles, SpiderMan, Selfies and Movies. This kid has my heart

We had groups of people come up practically each day/night and so that kept things lively and not so stagnant. Heading into the week I was worried I would hold back my friends from really doing things up while they were there since my stamina is non existent, my sun sensitivity is back and I'm extremely low on funds (I couldn't do the rides even if I wanted to anyways...) I don't think I got in the way, but I will never know for sure. Prednisone was a factor I know that, I ate everything! Ha! I told my friend she shouldn't have left me alone during my witching hours of 3-5pm... the chips just disappeared I swear! I am doing better at regulating it all but it is still a bit out of control. I'm hoping that once I taper lower I will see the water weight drop off and then I can work on the chip/treat weight.

My sungear in full effect! 

Yes, this happened. Ha.

At the pool in the shade, under an umbrella. Also, where is the tumor? 

My life isn't that bad if I step back and look at the giant picture. I just spent a week at a resort with my great friends because they are that nice to include me. When I started to have a meltdown, I went to a spa and stared out a wall of windows to a mountain side that had a family of deer on it. I was healthy enough to go for a week and enjoy as much of the time as I could. I watched two little boys enjoy all they could and play and swim their little hearts out. I spent time with my friends that I don't see too much cause our lives aren't intertwined as they once were - I miss those times but know that these times are just as important and have their own value. Was it hard to realize that I am now on the sidelines for real? Yes, but that doesn't change how I care about them as my friends and it just makes the memories a little different and may take a little more effort. They are worth the effort. Again, my life is actually pretty good, I just have this whole cancer bullshit to slap me down a couple times.

I am thankful for what I have, and for my staycation.

Ups, downs and meltdown

Sometimes I have to just stop and breath. That is what right this moment is. It's crazy how one day can hold so many emotions. Here's my day. . .
I am staying up at Snowbird, a local ski resort that is open for summer and my best friends have a week timeshare. It is a staycation about 25 minutes away and seems like a whole different world. You escape the heat of the valley into mountains and beauty. I am lucky enough they let me come stay the whole week, I'm sure there are days they want it to themselves though. Regardless it's the 4th year I've joined them and I look forward to it each year. Today I planned on heading to the valley to meet some friends from out of town and then I got a call to look at an apartment. As I got ready I could feel that things would go one of two ways... Good day or a steroid rage day. Definitely was heading for the latter.. I drove down the canyon and had to check myself because I was starting to just get annoyed at the drivers for no reason really. Then the apartment was pretty awful. Then just didn't feel great and had to fill time until meeting friends. By the time I met the friends I was drained. Luckily once they got there I got a second wind (the sugar high didn't hurt either) and was able to really enjoy seeing them.
After that I drove back up the canyon and just was overwhelmed. So many thoughts and things were just racing through my mind, I couldn't shut my brain off. Once I got back to Snowbird I needed to just stare into nothing, not talk to anyone. Luckily they have a solarium/quiet space I could take advantage of and I sat up there for an hour. It helped calm me down a bit but the thoughts still just came rushing in. Headed back to the room and my friend could see through the fake smile and I just lost it. Today I was just done once it is all said and done. I had my cry and then took a nice shower. Thoughts slowed down and I was able to relax on the couch.
I then turned the channel and there was the Craig Sager speech (next post) definitely not what I wanted to hear at the moment but definitely what I needed to hear.
Now to bed. Today is done. Tomorrow I can start fresh. Sometimes one day at a time is a giant feat. As in today. And sometimes you just need to actually let people see you in the breakdown. Be human. On to tomorrow.

Scans today

Today is scan/restaging day.
Whenever you change treatments they like to have new scans so they can have a new place to compare progress to. My scans were originally scheduled for later this month so they got moved to the next available, which happens to be a Saturday afternoon. Had some other plans, but that's the life of a cancer fighter - plans aren't really a thing. You can try but you always know that something may alter the plans or you will wake up sick as a dog. You never know.

I haven't really thought much about these scans - the anxiety isn't really there so much. If I'm being 100% honest I wouldn't be surprised if it has spread somewhere else, but I don't like to think that. I have been so lucky to have it stay localized that I just wonder how long that run will last. I truly hope that thought isn't true but it's always a possibility.

Scans never used to get to me. It was just something I did every 3 months, then 4 months, then 6 months, then a year. Now back to 3 months (or more!) They came back clear for so long that I just got used to it. Now I know there are tumors (just my neck) so I know they aren't clear but they could be worse. Now I either have major anxiety or none at all. So strange.

On a good note, I started my new/old treatment on Wednesday night and now on Saturday I can see a noticeable difference in the tumors sizes. Smaller and so much more comfortable. I haven't taken a pain med (besides ibuprofen) since Thursday, which is huge. I was to the point I was talking them every 4 hours on the dot. So great to have relief. I'm still not fully pain free and sadly will be taking a good amount of pain meds for my scans since I can't lay flat without it freaking out... Having my sister give me a ride today which is new. I usually go these things solo, but taking pain meds I don't want to drive. I'm being smart - asking for help. Strange I know!

In prednisone news, the water weight and moonface kicked in yesterday. Woke up so swollen. I took some pictures out with an old friend and it took all my might to not be devastated looking at the pictures and how heavy I look in comparison to a week ago. The steroids make you ravenous and literally uncontrollable urge to eat everything in site. It is unreal and so hard to curb. My witching hours are 3-6. That's when it hits the hardest and everything in site needs to be tried. I have done my best to have sensible snacks around but man it is hard! I know water weight will go down once I stop the steroids, but the added weight from the ravenous eating won't be so easy. Really trying to control it. I am down to 80mg (started at 120mg) and will continue to taper as long as my liver enzymes continue to lower. At this rate I will still be on them in 5 weeks. Talk about a summer of roid rage! I will learn the tricks to deal with it, just have to work at it all. I do like the energy it gives me, even though it is false energy. I don't like when it is crazy anxious energy though, that's happened two days this week. Not a fan. Also it affects my sleep so now I'm on sleeping aids, necessary evil. I haven't talked to Oprah or slept are/drive or anything which I'm taking as a win. Each day is different.

Random exciting other things:
Going to Yellowstone in August and am really excited
I am looking for a place to call my own. Renting, looking for ideally a 2bedroom place. Keep your eyes open for me - no apartment complexes though.
I'm going on a staycation to Snowbird tomorrow and am making some fun treats for us to have (prednisone driven...) I get excited to cook when it is for other people. Planning on making smore bars and a tasty fruit tart. Yum!

Hope this weekend finds you playing and laughing and escaping the sad news of the world. This life is tough but it has so many little things to be so grateful for. Like making a fruit tart for friends - which really boils down to I am happy I have the energy to make something, that I can make it, that they will enjoy it and that I enjoy them enjoying it. Little things.

Oxoxo

MEDS

So I have been asked how many meds I take a day... Well with the new meds it is a lot as it adds 9 pills a day. I decided to show you exactly what I take.

Here are my AM meds.

They are as follows: 

Zelboraf (3) - BRaf Inhibitor/Chemo Drug

Ibuprofen 800mg - Pain

Gabbapentin (2, 600mg) - Never Pain

Personal Pill

Allergy Pill

Thyroid Pill - Caused from the immunotherapy

Prednisone (4) - Currently on 80mg down from 120mg

Stomach Coat Pill - Due to the Prednisone dose, to protect my stomach

Pain Pills (1 1/2) - These vary per day, and multiple times a day

NOT PICTURED: Mid day meds: Gabbapentin (2, 600mg) and another Ibuprofen 800mg. If pain is climbing I will take additional pain meds too although I try not to

PM Meds: 

Zelboraf (3) - BRaf Inhibitor/Chemo Drug

Gabbapentin (2, 600mg) - Nerve Pain

Pain Pill (1 1/2)

Cottellic (3) - BRaf Inhibitor/Chemo Drug

Personal Pill

Sleeping Pill

Probiotic

So, lots of pills. Since my liver situation is still so high, all but my nerve meds all process through my kidneys. For now I can't take anything else that will process through my liver such as Tylenol so I have to be careful. Before the liver situation I had two additional meds I took as well... so many meds! The life of a cancer patient is what I say. As the pain decreases with the BRaf inhibitors I will be able to reduce the pain pills, ibuprofen and nerve meds. I'd like to get down to as little amount of prescriptions as possible but that will take some time, but that is always the goal. Lets just say they know me at the pharmacy. 

Hotel Huntsman, 2 night stay

Wednesday, I went in for my scheduled treatment and went in to get all my labs done before they give you the go ahead to head to infusion. I felt great heading in, just intense nerve pain in my neck. Otherwise just a bit tired. For some reason my port wouldn't give us blood but would flush. I guess this just means the fibers built up like a clot but only blocked one way. This made it so my numbers weren't ready once my doctors appointment started. We talked about things and how the past 3 weeks have been and going forward and then the numbers finally came out. Once they checked my numbers it was obvious something wasn't right and it definitely wasn't right. Turns out my liver was in toxicity. The high/normal that the liver enzymes should be is 40 and 60, mine were 1206 and 1214 (respectively) so I got to be admitted to hotel Huntsman for observation and to get an intense steroid regimen in place and started. They also discontinued all of the meds that had the potential for raising the liver enzymes and one of those is my nerve pain meds. Lets just say I was not happy and the pain started to rise instantly. They did their best to control it but it was finally decided (with a lot of input from me and a doctor friend) that I could have it back. Just missing a day and a half of it really put me behind and I am still catching up. After the first night my numbers began to trend in the right direction, ~700 and ~1100. They needed to keep me to make sure they were continuing to trend down - Which they did and I was home Friday afternoon. Like I said I didn't have any real symptoms or pain from my liver, just from my neck. 

Because I reached toxicity (considered auto-immune hepatitis) I am no longer allowed to continue on this treatment. I said a bad word and my doctor said to not get upset just yet. His explanation was that he just returned from a major oncology conference where the 5 year data points have been released for this treatment. Following people who dropped out for toxicity, etc vs. people who completed the full treatment regimen, it showed the people who reached toxicity lived an extra 10%. Also we are most likely adding radiation to the mix which will accelerate the response in my neck while the drugs are still in my system. There are still options, we will just have to figure out the best one and where to go from here. Not the end of the line. 

I have appointments this week to go over all the next steps and I'll keep you posted on those. For now I am just getting the nerves to calm the crap down and getting used to a very high dose of steroids - hopefully not for long!

Day one - not how I wanted to spend my days!

I was able to leave my room a lot and actually enjoy the view from the floor

New lucky charm

Home was a good goal for the stay!

Live Updates From My full Day of Scans and Appointments

It is currently 4:18am and I am lying in bed, awake. Sadly I woke up from the pain in my face from the swelling around 3:45am and took some Tylenol (I know I probably should take something stronger but oh well) and then have been trying to fall back asleep since. I have been thinking of the day ahead of me, what needs to be done; take jewelry off at home, what I'm wearing today, what time I need to wake up to start drinking the nasty contrast for the CT scans. etc. And then thought I should write a blog throughout the day as I have time. My day starts at 8:30am when I have to start drinking the barium sulfate contrast. I will drink that for an hour and a half leading up to my scans. I have blood draws/IV placement at 9:30. CT scan at 10:15. MRI at 11. Psych follow up at 1pm. Then have a break to get some food in me since I can't eat before drinking the contrast. My sweet friend is meeting me at the hospital to grab food since I have a bit of a break. After that I then have my appointment with my oncologist at 3:30. Here we will get the results from the scans and hopefully get some more answers about what is happening with my swollen and painful face. It is a long, full day.
Many people ask who goes with me to all of this and often offer to join me. I usually go it alone unless I know big things are going to be talked about, then I may invite my family up. Even then I'm reluctant. I have been dealing with all this for so long (7+ years, and then heavily for 15 months) that I just feel it is annoying to bring someone else along for the long waiting game. These are long, drawn out days. My appointments usually take 2+ hours and I feel that is a lot to ask of people to sit around with me. I don't like sitting through it, why would I ask for the busy people in my life to do the same? I also feel like I have to entertain them to a degree and that's not what I'm there for. I know it is silly, because if someone asked me to go with them I would be happy to spend my time waiting with them. Ahh the crazy role reversal.
I'm going to hopefully get some more sleep now and will update this through the long day ahead. Gotta love being able to do all this on my phone! 4:38am and back to sleep I go (or try at least!)

10:24 @ Huntsman
I just finished my CT scan and am waiting for my MRI. They were able to get my IV placed on the first try which is always nice as I am a hard poke. My veins are sick of being bothered. I ran into some of my previous nurses and they agreed that my swelling is most likely inflamed parotid glands, what we do for those I am not sure. They also find it strange that my previous IV/blood draw sites all are flaring up... My body is just not liking things right now.  After the MRI I should be able to grab a snack before my 1pm appointment. Here's hoping!

12:16 @ Huntsman Bistro having a snack
All done with scans/MRI. It's always nice to have them done and out of the way for a while. My body really hates the contrast I have to have for them so that doesn't help either. Not sure how I feel about the scans, not sure if I feel like they are going to show progression or stability. The way I've felt the past 10 days gets my mind wandering to things I don't like but I try my best to not get too ahead of myself. I will say, no matter how many times I come up here I'm always in awe of the view.

3:06 @ Huntsman
Psych follow up all done. Pretty straight forward, went over managing anxiety related to everything and just options available to me as far as resources. Since my panic attack I've only had a few small anxiety moments but am able to recognize them quickly and calm myself down.
My dear friend met me at Starbucks at the U of U hospital and we chatted and had some mid day caffeine. Much needed - both the talking and the caffeine. She's dealt with cancer more than she should as well - losing her father and uncle within months of each other. She's a good person to have around and understands the cancer world and all it's craziness. She and I have become very close these past 15 months and I'm very grateful. Now just waiting to go to my final appointment at 3:30 to get results and answers about my face.

5:32pm @ Huntsman, still (in my car though)
I am finally done with my appointments. My last appointment was with my oncologist. Scans showed that my tumors have stayed the same for the most part since my last scans 8 weeks ago, no bigger but not smaller either. There are no new tumors and my brain is clear too which is great. Since I have basically hit a plateau and side effects are starting to pile up they feel the best thing to do is stop the BRAF inhibitors and switch to the Ipilimumab/Nivolumab combo. I'll go more into this in a separate post. This also means I can stop taking the prednisone which is great!
As far as my face swelling goes, they brought up a head and neck surgeon and he agreed that it is the parotid glands but said they aren't infected which is good. There is a very very slim chance it is mumps, yes crazy I know, but we still needed to do an additional test to make sure (which meant an additional blood draw since they took my IV out after my MRI). Regardless I can start to treat this at home with heat, massage and lemonheads. I can deal with that. I feel pretty good about it all for now but I am guessing I will start to think it all through more in the next few days. Right now I'm going to see a lacrosse game and a baseball game.

9:44pm @ Home
I decided to go see my friends daughter play lacrosse for a minute and then watched my favorite little tike play baseball, if you want to call it that. It was good to just decompress for a little bit. I turned my phone on silent and just enjoyed the simpleness of the night. Grabbed some dinner and now I'm home. I'm attempting to put heat packs on my cheeks but it is proving to be interesting in the least.
Processing the day a bit and will be heading to bed early tonight, as in when I finish this post.

It was a day. Not good, not bad, but a day. Happy to have it done and now have some things to move forward with and decide. Now let's hope the face swelling goes down quick and I can get back to looking like my normal self.

Goodnight.

Still Swollen

Today makes 5 days of waking up very swollen in my face, along with not feeling very good in general. I look like I gained an additional 50lbs but just in my face! It is very painful too so that isn't very fun.
On Thursday I went to the Acute Care Clinic at Huntsman just to make sure things were ok and for them to see it all in person. There are a few things it could be but there isn't a clear answer as to what is really happening.
First: Lymph-edema, a back up of lymphatic fluid caused by damaged lymph nodes or lack of lymph nodes to flush out the fluid. While this is the most likely of the options, it doesn't explain why it would be happening on both sides of my face. It is definitely more prominent on the scar/surgery side but there is still swelling present on the other side.
Second: Cushings Syndrome ie: Steroid Face/Moonface. This is when your body retains water in the face, neck and stomach due to steroid use. Since I have been on prednisone (steroid) for over 2 months this is definitely an option. While annoying, there isn't much you can do about it. I don't doubt that I started to retain some water in my face over the last two months, I don't feel this is what is going on. Some of the reasons are that cushings syndrome isn't painful and is symmetrical usually. Mine is very tender and sensitive and definitely not symmetrical.
Third: TMJ- jaw joint issues. While I highly doubt this is the case, the doctor still made sure to check it all out.
Fourth and finally: Overactive Glands/Lymph nodes from being sick earlier in the week. I came down with a cold on Sunday evening and Monday that was not very fun. Tuesday is when the swelling began and has just stayed persistent since. It is very likely that my glands are just over producing and reacting to the sickness and there isn't anywhere for the fluid to go. This is what I feel is going on, and that my immune system has just decided to freak out and overreact in the face of the cold. This would explain both sides swelling, as well as the tenderness. There are some very deep lymph nodes left on my left side that could easily be trying their hardest to help but in turn making things worse.
There isn't really any way to know exactly what is going on but I have scans on Wednesday which will help us get a better understanding of what is happening below the surface. For now I have to just live with the swelling and tenderness and hope that it begins to go down. It is just cancer letting me know it is still around, in case I forgot. Ha, nope!

I'll let you all know what happens in the next few days, hopefully that my face isn't swollen anymore!

I woke up like this...

And sadly it isn't pretty...
Yesterday I woke up and felt like I was a bit swollen in my face. I attributed it to a very common side effect of prednisone called "moonface" where the water retention is focused in your face. I have had a pretty crazy cold the last two days and just felt that maybe my immune system just didn't have the defenses to hold back side effects anymore. I felt a bit better throughout the day yesterday and went to bed not thinking much of things.
I woke up today extremely swollen in my face, particularly on my jaw and jaw joints. It was extra painful and tender and my side with the scar, cancer alley as I'm now calling it, had some additional swelling. I also had a crazy headache that just barely has subsided. I had a slight fever, 99.1 but that comes and goes. A bit of body and joint aches and some rash spots are forming. Ahh the joys of side effects and cancer.
I called my nurses and they want me to hold my meds until these things resolve. I don't feel that is the best answer, but I will do what they say. I have a feeling it may be lymphadema, or a build up of the lymphatic fluid, and since I don't have proper flow due to removing the lymph nodes on that side it would make sense that it would build up. And me being sick makes your lymphatic system work and produce more than normal. Regardless, I feel pretty crappy. I have hunkered down the last few days and today is no exception. I am planning on sleeping with my head elevated to see if that will help take the swelling down. Guess we will have to see.

Here's hoping tomorrow is a better day! 

Not the prettiest pictures... but we can't win them all. And I had just woke up. 

Good days after good days

This past month I have felt really good. I haven't really had any bad days that I can really report - just an occasional random side effect showing its head for a minute and then gone for the most part. It makes me almost forget I am sick. I think being on the steroids (prednisone) has really helped as far as side effects go, but then there are the side effects from that med which I'm really not a fan of. Now that I have been on it for almost two months the water weight gain ie: moonface is definitely a reality as well as some retention in the stomach area. I am really hoping that once I am off of the prednisone the weight will drop and be back to normal. But I can't deny that the drug is helping me live a full life while also treating my cancer. It also gives me random energy that I definitely didn't have a couple months ago. I am trying my best to utilize it and not just waste it. I have started to work a bit more, helping out at Market Street Grill corporate offices as well as helping at the Farmers Markets yesterday. It isn't much but it is definitely something and is keeping me busy.

It is hard to plan out the next few months though, not really knowing what the treatment road is. I have an idea but that can change once I have my scans in 10 days. Going into them I don't have too much confidence but am really trying to not focus on it. I can still feel the small tumors in my neck and think I've hit a plateau with the meds and their effectiveness. I have also had some weird pains/sensations in my scalp that I can't really describe and then there is the slight rash that just is barely there - but just enough to notice. 

I have been super active this past week - even exercising which is a new thing for me. I went on a 3.2 mile walk yesterday and was definitely tired, but not too bad. I also had a lot of social stuff this week and was able to enjoy it all without having to bow out early cause of being tired or whatnot. That is definitely a nice change. 

I woke up today with a cold and side effects so I am laying low and giving my body a rest and hopefully tomorrow I will be feeling better. I probably over did things a bit this weekend, but it was worth it. I am trying to embrace these days that I am feeling good so that if that changes I don't feel like I wasted any of it. If that makes sense.. 

Scans are on the 27th so we will see what the next month holds. For now we are just sticking with what is happening now - just lots of at home meds and such. 

Onward ho!