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)

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)

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… 

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)