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.

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!

The Gong!

In the cancer world there is a gong or bell that you get to ring when you finish chemo or a cancer treatment. It is in the infusion room and once you are finished with your last treatment you get to ring that sucker!
Because my chemo was done in an inpatient setting, so in the hospital part not the infusion room, there wasn't a gong or bell or anything. I litterally just walked out the front door, no real closure or validation for the fight I had just endured. I had wished there was one so bad!

Yesterday when I finished my  last infusion I finally was able to ring the gong! I asked the nurse to film me as my friends had left by then, and she didn't catch it the first time so she had me ring it again! Two times - so perfect! For the two treatments I have completed. It really means so much more than you'd think. It is the little things in this fight that really mean a lot.

Here is the video of the second time.

Baby Hairs

It has been over a week since my last treatment (injection/infusion) and I am feeling so good! I haven't had any side effects besides some fatigue but I don't really count that. I am hopeful that I will continue to not have any and things just keep going as good as they have been. It is really a great feeling to have energy to do things and not be sick. I feel like I am starting to have a handle on my life again, which is a great feeling after 8+ months of dealing with my cancer returning.

My hair has really started to grow - I didn't realize how much until I took a picture of it and compared it to one I took on 7/22. (2 1/2 weeks ago) Here are the pics..

7/22/15

8/7/15

It's amazing how much I lost but I am still thankful to have some of it left. My doctor said that I lost more than most people who go through biochemo. It's not a ton, but they are baby hairs and they are there!

Here is a picture of the tumor(s) and the size they are today. .

All in all things are going good and I couldn't be happier. I have two more weeks off before the next treatment and have some fun things planned.

xoxox

Chapter 4 of the battle

As some of you have been following, I had my follow up scans this past week. Going into them I was anxious and had some bad feelings.. My fears were confirmed when the doctors came in with a sad tone and face. I have a new tumor growing in my neck. I can feel it so I am not surprised, but I would have loved for them to tell me that it was just scar tissue. A fine needle aspiration confirmed it was melanoma.
I had two treatment options presented to me. One is a clinical trial with HF10 (a modified herpes virus) in combination with Ipilimumab and the other is PD1 (Pembrolizumab). I have chosen to do the clinical trial as it is providing very good results so far. If the trial isn't showing good results I will switch over to PD1. Treatment will last 4-9 months depending on how my body tolerates it.  I am starting hopefully July 8th.
This is sad and frustrating to know that chemo didn't work and that this is an agressive tumor as it grew during chemo. I am clear everywhere else though, no evidence of disease anywhere else in my body or my brain. It needs to stay that way. I am hopeful this treatment will help me finally beat this cancer once and for all.
I'm planning on getting back to normal (or as close to it as possible) in the next few weeks and hope the side effects don't get in the way of summer. I am still taking things as they come and one day at a time - it's all you can do, and fight!

Random Update

I’m amazed at how fast time goes by when you’re not really doing much - it makes sense that when you’re busy time flies! I have been pretty mellow, just resting and slowly recouping from treatment. Today marks a month since I started my third round. I can’t believe it. I also can’t believe how weak I still am. I have to continually tell myself to think of what my body went through this year and try to not be so hard on myself, give myself time. I went for a walk today and made it half a block before turning around.. It will take time to get back to to my normal - or to my new normal. I am thankful to be where I am though, I know what the alternative is and I hope to never be there. 

My nausea has gone away finally, I haven’t taken meds for it for about a week now. Eating every 2 hours has definitely helped with it and I am getting my taste back. One thing that has gone away is my sweet tooth (if I haven’t said that before) and it is the strangest thing. I was the sweets queen! My checks have “Life’s short, eat dessert first” on them. Now I don’t even want to see sweets. This will be good as far as losing weight, but it is just so interesting that such things can change your ways. Chemo for the win on that one. 

I am learning what it means now to fuel your body with food. Before food was a comfort and I mindlessly ate whatever I felt like - within reason, kinda. But now I am choosing foods that will help get me stronger and help with nausea and fatigue. I can feel a difference in the way the foods make me feel - something I never have felt before. Another good thing to come from this ordeal..

I still have not had coffee, and caffeine minus the couple sips of diet pepsi I had the other day, since the beginning of April. Caffeine adds to dehydration so that is why they made me stop and coffee was too hard on my stomach so they pulled that as well.. I suppose I could start back up but it just hasn’t sounded good and if I can kick sugar AND caffeine, well that’s a pretty big deal. I am sticking to water and crystal light for now. 

I am nervous to go back to work. My energy is so low that I just don’t feel I will be able to do the job I want to do or what they would like me to do. I know they will be more than accommodating for me but I just feel bad that they have to change things for me. I will have to slowly ease into work, but it will be good to finally have things I’m responsible for. I have a dogsitting job for the first part of July so that will be good as well. It has been nice seeing people for lunch and dinners and such lately though - I love my friends and family. 

That’s the random update for now, just passing time until scans in a week and a half. It really will be good to get those done and know what the next chapter holds. 

Love is Love

If you know me you know that Gay Pride is something I love to attend. It is one of my favorite days of the year and I have gone consistently for the past 8 years. I was getting sad when I looked at the timing of chemo and pride and it wasn’t looking like I would be feeling good enough to go. I have been really weak and can’t stand for very long and that’s all you do at pride is stand and watch the amazing people walk down the parade - at least that’s what we’ve done the past 8 years. Then I thought hey, why not bring a chair! Amazing right? My best friend brought me a chair and an umbrella and I got to enjoy the pride parade. I still wasn’t able to go to the festival but I felt part of the tradition. 

Although I have skin cancer and one of the main causes is the sun, I will not be a prisoner of the indoors. I will adjust what I wear and lube up on sunscreen and will enjoy an outdoor life. It may cause me some anxiety but it is just one of the things you can’t avoid - being in the sun at some point. I have bought some great hats and scarfs though and will be more covered up that in years past. I also have stocked up on new sunscreen - don’t want to run the risk of it expiring and not working. 

Hoping for a great and enjoyable summer and I am so happy I got to spend pride with some great friends.

Smart Doctors

I am so lucky to have some of the best doctors in the field of melanoma. Here is my general oncologist talking about the new advances in the treatment of melanoma. I hope to never have to need any more treatment but it is good to know so much progress is being made. 

Skin cancer immunotherapy is game-changer in surviving melanoma, doctors say

Pride

Happy Pride! Don’t mind my awesome set up.. #pride #loveislove (at Salt Lake City Pride Parade)

Little Rant

So I have been waiting for the bills to come in from biochemo to see what the dent is. I am on my own insurance, Obamacare persay, that I got on my own - not through my employer. I am a full supporter of all the progress with insurance and Obamacare - without it I would not be able to have insurance due to a permanent spot on the “preexisting conditions” list (thankfully that has been done for a few years!) Regardless, I have good insurance that I am very happy with. Onto the rant…

I got the explanation of benefits (EOB) for chemo and was BLOWN AWAY! For one round of my chemo they charge the insurance $83.8K! Unreal!!! And the allowed amount is $50.4K… The difference is more than I made the entire year last year. Keep in mind I did 3 rounds of this… That’s $251.5K ($151.4K after the adjustment) in treatment… an entire house! A really nice one. So my upset is that if I didn’t have insurance how would I even come close to affording even one round - thus the flaw in the medical system. People would still (hopefully) get treatment and then claim bankruptcy causing the cost of health care to continue to rise or wouldn’t get treatment and succumb to the disease. Just sad. 

All this said, I am not sure what my portion will be of this, just waiting to see. I feel so bad for the people who can’t afford the same coverage and treatment as I do. I am lucky that I have been able to have coverage my entire life (minus a short 5 months - and just not having it for that amount of time scared me too much). 

I am scared for what the next president will do with the healthcare system, but hope I can keep my status as insured for the rest of my life. 

End rant. 

Entering into observation

I have made some big decisions this week, one of them being whether or not to do radiation. 

The tumor board presented my case once again and were somewhat indecisive but came out with more people saying yes to radiation. The two people who said no are my two primary doctors. After hearing the verdict I decided -against- radiation. Here’s why: the risks are so great for negative side effects that I don’t feel comfortable going forward for the stage my cancer is at. I have no active tumors to aim the radiation at, it would just be a large, broad area hoping to get any remaining cancer cells lurking (if there are any left after chemo). They explained that there isn’t any research on how radiation on the corroded artery fairs in the long term and most likely leads to plaque build up and increased stroke and clot risks. Having radiation on my neck will also kill all the saliva glands on that side causing long term dental problems. There is possible hearing loss. And in the rare case that the cancer returns, it most likely will return in the neck area first and after radiation it makes the surgery extremely difficult - like cement - limiting the success rate of removal. I have made this hard decision and will have to stand by it. I have decided that if a solid tumor forms I will do radiation, but where I’m at right now it is just aiming at too large of a area. 

So with this decision I entering into observation only. I have my scans every 3 months for the next 2 years, and hopefully they are clear forever and I can move past this hard chapter in my life. I am not sure what the next chapter holds, but right now I’m focused on getting stronger and healthy so I can enjoy life as I did before. I have decided to give myself another month off of work and will hopefully feel strong enough to go do some light exercise soon. Right now the drugs are still having an effect, but I am getting a little better each day. 

It has been an interesting and unforgettable journey - one that showed me what true support from friends and family means, and man was it overwhelming but in the best way possible. I will never forget this time that’s for sure. 

One day at a time - even in observation!

And just like that I'm done with chemo

The moment I have looked forward to for the last 2+ months is actually here, I am done with biochemo. 

I went in on Monday and they were very busy so everything started pretty late. After I got all 5 drugs I had a very rough night full of chills, rigors and fevers. On Tuesday my labs came back with very high (10x) liver levels so my doctor had them stop/pause all medications. He ordered a liver specialist to come in and look at my case and although the liver doctor said we should be safe to continue, my doctor disagreed and just like that I was done. This wasn’t the way I pictured finishing such a giant task, so I was pretty emotional when the nurses told me they were just going to keep me overnight for fluids and observation. I wanted to go out strong, but my body had a different plan. My doctor came in the next day and explained to me that the risk of liver failure was real and that it was a higher risk than my cancer so that is why we stopped treatment. He also was very confident that I have received enough chemo for my stage of cancer so I am not really missing out too much. I went home Wednesday afternoon. 

Although I only got about 24hrs of drugs I still am feeling the effects. Tired, weak, nauseous - but not anything close to what I would feel after 5 days of solid drugs. My friend compared 24hrs of this chemo regimen to running on the treadmill for a month. It was a good analogy I thought. Through all this I have been pretty impressed with what my body is capable of taking. Although I may be the nausea queen, I have tolerated the drugs well I think. I made it a goal to not be in my hospital bed unless it was night time or if they asked me to be in it (rare), so I sat in the window seat or recliners or took walks. The nurses were pretty surprised to always see me sitting or doing something. I attempted a puzzle this time but was too overwhelmed with everything that I didn’t get far. If I had 2 more days I probably could have finished the 500piecer. 

Now we just wait for the radiation verdict from tumor board next Thursday to decide what is next. I am leaning towards no on radiation just based on the cons associated with it, I feel they are greater than the benefit for my stage since I don’t have a tumor to shrink. I have scans in one month, and if they are clear then I will just be in observation with scans/body checks every 3 months for the first 2 years. I’ve never been as anxious about scans as I am for this set.. scanxiety is what it is called. Hoping they are clear.

It’s been a hard couple days mentally after being home. It is hard to go from being looked after so closely to almost nothing. It is what is called patient to person transition/lost in transition. I think I am going to have a hard time starting life again, like nothing happened. I don’t really know what is next for me and I have put so much focus on my cancer fight that now that it is actively over I feel a bit lost. I hope this will pass and I will be able to move forward quickly.. One day at a time right?

#teamlex

I am filled with so much joy and gratitude today for each and every one of you who came out today and bought delicious tacos and endless raffle tickets, you raised this girl $2,607!!! 
I know I always say I have an army of supporters but today I got to see that army in action first hand. It truly was a humbling day and experience.
Thank you @salsitas_mendoza for all your hard work today, you really went above and beyond and it means more than you’d know. Thank you my #teamlex army! Love each of you! (at Wheeler Historic Farm)

Gearing up for round 3

I have turned the corner and am headed into my final round of biochemo on Monday. It has actually gone by quickly for me and I see the light at the end of the tunnel. 

This past round has been pretty hard and I struggled with dehydration, weakness and nausea. I had to receive IV fluids 4 times after leaving the hospital which was stressful. We are hoping to combat the dehydration better this next round without seeing the inside of the hospital as much. 

After this round they are going to present me to the tumor board again and discuss whether or not radiation is beneficial or more harmful for my current stage. If they decide radiation is -not- beneficial then I will be finished with treatment for now. If we do radiation then I will have 21 treatments, and be done in about 6 weeks. 

I am excited to be almost done with the hardest part of this battle, the chemo, and to start getting back to my normal life. This summer will not be wasted, it will be filled with friends, family and fun. Fighting cancer gives you a different outlook on things. I know that eventually I will have to grow up and get a real job, but 2015 is going to be lived simply and adventurously. There is always time to grow up, just later.

One day at a time, until the finish line.

LAX Dedication

This is one sweet and thoughtful girl right here. She has dedicated the state Lacrosse semi finals game vs. Alta to me and my cancer fight. Wish I could be there in person to watch you kick butt! Love you @nici_boutwell I’m honored. I’ll be cheering for you and Brighton at 7:30! Go Bengals!!! 🐾 (at Brighton High Bengals)

Short Hair Don't Care

It came the time in this cancer bs that I decided to cut my hair. Not an easy decision but I was surrounded by love and my main gubby was cutting so I knew it would all turn out ok. There isn’t much you have control over when dealing with cancer but this is one of them. Here’s to #shorthairdontcare and kicking this #Melafuckinoma s ass. (at Salon NV)

Todays the Day

Today is the day that I am cutting my hair. For the past two weeks my hair has been coming out and it is now super thin and just doesn’t feel like my hair anymore so it’s time. I am going to have Tyler cut it into a pixie and see how I like that. I can’t commit to a shaved head just yet.. if it continues to fall out at the rate it is then I will end up with that regardless. When they said that my hair wouldn’t fall out but thin, I never imagined it thinning this much. I’m sad I wasn’t able to donate my hair but it is what it is. I’ll post pictures of the new do soon. For now here is some pics of the hair that has fallen out… 

Melanoma Monday

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

Just a couple..

Just a few drugs and fluids… Crazy what it takes to kill some cancer cells! #melanoma #stage3c #melafuckinoma #cancersucks #fcancer (at Huntsman Cancer Institute)

On the eve of round two

It is only fitting that on the eve of round two my hair has begun to thin. It technically started yesterday when I pulled a strand and it came out with minimal effort. I then ran my hands through it and about 30 strands came out. Now I know, hair falls out normally (and mine does a lot regularly in the shower/brushing etc) but this was on top of that. I showered and about the same came out but brushing a good amount came out as well. Throughout the day I just kept finding rogue strands. It’s a sad day. I am still holding out hope it will just thin and not fully fall out so I am not cutting it just yet. If it continues to be compounding then I will be looking for a new short do. 

It’s crazy to think I will be in the hospital this time tomorrow, where has the time gone. I guess I’m as ready as I’ll ever be. I’m making some hospital shirts today so that I don’t have to wear the hospital gown. They will have cut sleeves so I can put them on even though I have to be connected to the IV pole 24/7. I think it will be more comfortable and cute. Wish me luck! 

On to the next day, one day at a time.