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!

Immunotherapy is getting some good facetime!

I got a message from a friend today that NPR was doing a segment on immunotherapy and said I should listen in as it is highly focused on Melanoma. It describes in a good detail what exactly immunotherapy is and what it does when administered.
Immunotherapy has been a part of my treatment since the beginning. My biochemo was 3 chemo drugs and 2 immunotherapy drugs. My clinical trial had one part immunotherapy and one part injections. The treatment I am on now is not technically an immunotherapy but does act very much like one. My next treatment is two immunotherapy drugs combined.

Also, the April 4th issue of Time Magazine cover story was focused on immunotherapy as well and was a good read into how specific the treatment is, as well as how hard it is to get access to and fund these very expensive treatments. Let me remind you that my treatment cost last year was over $750K charged to my insurance (man do I really love my insurance company!!!)

I have attached links to each of these reports - worth a read!

Cancer Immunotherapy Article in Time

Immunotherapy - This is one that only Time subscribers can read sadly.. but worth sharing if you are a subsriber.

The Diane Rehm Show and look for the The New Promise of Immunotherapy Cancer Drugs (April 21, 2016) episode. Or follow this link: http://tunein.com/embed/player/t105523715/

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. 

#rallyruby update

Little Ruby is a little tough fighter!

Here is the update on her and her family.
Her lung mass biopsy came back positive for metastatic melanoma and then was followed by a PET scan. From that they found that it is only in her lungs, no where else which is really good! Also the insurance/drug company allowed the drug to be administered her in state at Primary Childrens - they don't have to uproot their family!
Ruby got a port-o-cath and her first treatment of Nivolumab on 4/8. So far, 10 days out, she hasn't had many side effects except some soreness from her surgery of the port and then some tiredness. Amazing. Blessings upon blessings.

Again, you can follow their journey here: http://thacksmack.blogspot.com/

Keep them in your thoughts and prayers and that she continues to tolerate treatment going forward.

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!

Little jaunt to the store and stuff

Lately I have had more energy than normal, not sure if it is just that my body is tolerating things well or the my love/hate dose of prednisone (steroid) I am on. I am leaning towards a combo of both but regardless I have had more energy lately.
I was able to go out for a good friends bachelorette party last weekend and stay out way past my normal bedtime, like hours later. I was very impressed with myself. I was in turn exhausted for a day or so but it was worth the fun since I wont be able to make it to her destination wedding next month. (On a separate note, I had some weird reaction the day of her party and was red like a sunburn in really random spots... still not sure what was going on. Thankfully that has gone down)
Last night I needed to run to the store for some things and the place I am dogsitting is close to a grocery store so I decided to walk to the store. This may not seem too crazy to some but keep in mind I haven't had the energy to be "active" or "work out" in over a good year. Even before that I wasn't too active - just mostly physical therapy for my old lady back in the pool (I was the youngin' in the pool everytime) So the fact that I felt good enough to think about walking the half mile round trip route to the store is a big deal. So I did it. Walking back was a little challenging since I bought more than I expected so it was like weightlifting too.
I am definitely out of shape, but I was still able to do it and I'm impressed with myself. Baby steps. I decided to go on the walk again today and got myself a tea. Today was a bit different since it was in the sunlight and as I have said before my meds basically turn me into a vampire and I burn in minutes while being outside. I got a bit of sun yesterday just driving in the car.. I'm a mess. Unabomber is just the look I am going to be sporting from here on out.
I am hoping to stay feeling this well and continue being active. Need to build up my stamina and get the blood flowing. Again, one day at a time.
Now off to a girls night barbecue.

My unabomber attire for my walk

Swollen and red.. 

Sunburn? Reaction? Who knows...

Looking back at biochemo days...

A year ago today I was at Huntsman Cancer Institute, checking in for my 5 day inpatient stay to start biochemo (3 chemotherapy drugs and 2 immunotherapy drugs all at the same time; 5 days on; 16 days off x 3 rounds) I was terrified. I had a good idea of what was ahead of me but also no idea at the same time...
Biochemo definitely was one of the hardest things I have ever endured. I don't remember the last two days of the 5 days inpatient, they are completely a blur. It may be that they push your body to an extreme toxicity rate that your mind just blocks it out. Who knows. All I know is that I am happy it is behind me and that I wont be doing it again.

Although it was brutal, it showed me a lot of things. It showed me what courage looks like, even if that meant just making it through the next 30 minutes of rigors (extreme shakes during a fever) or it meant making that lap around the hospital floor so that you got some extra circulation in your legs and blood flow in general. I learned what strength meant and I leaned on my family and friends to help build that up, day by day. Sometimes strength doesn't mean grinning and bearing it, sometimes strength means breaking down and sobbing while keeping your arm still as they place a PICC line. Or it means sitting up outside of bed and working on a puzzle so that you don't sleep the entire day away. Or dragging that dang IV pole around with me for 5 days... and courage not to punch it when it would beep at all hours of the night, talk about the worst noise ever! #Myarmy showed up and #teamlex was formed; I have never felt more loved in my life.

It's crazy to think how long I have been in the trenches with this cancer and hard to digest the timeline that is ahead of me but for now I am here, trying to make the most of what I have been dealt.

Melanoma, I hate you with a passion but I can't deny that you have helped me change my outlook on life and the people I choose to share it with. I have made the choice to face this with positivity and and possibility - to take the worst thing that can happen and make it the best thing that's happened. It is a daily struggle but worth the hard work.

I have come so far from this day a year ago and hope you all follow me as I continue this fight until the end. Thanks for those who have embarked on this insane journey with me (especially those amazing friends who met me in the lobby and honked at me driving up on day one, you know who you are!) I don't know what I'd do without you.

Love you all to the moon and back, a thousand times over.

xox

TL: Me and my IV pole, day one. TR: One of those moments I don't remember

And below: My message to Melanoma!