~ Day 21 ~ Quarantine

Ok, maybe not that bad but I feel like it. I spoke with my doc today who said my white blood cell count is super low, I'm anemic and pretty dehydrated. I'm having a hard time eating and my caloric intake has been pretty low. This means I have to stay away from people for the next couple days so I can attempt to get my iron level up, rehydrate and not get sicker. But tomorrow is Connor's basketball playoffs and I have to miss them. Connor actually demanded I stay home once I told him what the doctor said. Thankfully, Matt is stepping in and can take him. So at 9:00 tomorrow morning think of him at OJHS and wish his Blue Devils luck. I'll be at home in my bubble.
~ still climbing mountains ~

~ Day 20 ~ I'm scared

I found out that one or more of the meds is damaging my liver. If this continues I may have to switch meds which means I'll be dropped from the clinical trial. This course of treatment had the most promise of all the approaches we discussed to decrease the growth of the tumors and still let me lead a normal life in the process. Now I feel like I'm starting over and I don't like the options. I know there will be setbacks but it's hard to be back to square one and face the fear of what's unknown around the next corner. Each day is getting harder to get through as I get more physically and emotionally exhausted. Prayers are needed for strength right now, friends.
~ still climbing mountains ~

~ Day 19 ~ Hiatus

~ Day 18 ~ Strange side effects

The last two days posts weren't very much fun, I know. I had to get everyone up to speed on how this all started. It's kinda like having to explain the first half of a movie to someone who showed up late, ten times over. Not that I mind but I need to save my energy for the very fun side effects of my new drug friends. They all bring a special somethin' to the show. So in no particular order of their onset or annoyance factor, here's the list of ones I wasn't expecting: Swollen face, swollen ankles and feet (kankle-lite), blisters on the bottom of feet, rash on my hands, metal taste in my mouth, tooth ache, losing my hair, gray-hair growing in way quicker, cracked old-lady looking skin, the strangest color of pee I've ever seen, how do I put this one?.....an eagerness to see Matt, and my personal fave......pimples. Yeah, who knew the drugs would make me look 16 again except all tired and haggard? Ah, the joys of cancer!
~ still climbing mountains ~

~ Day 17 ~ Unwanted Diagnosis

Nothing prepares you to hear those words.....YOU HAVE CANCER. I've heard bad news before but somehow was always prepared for the news. Usually it was because it was more of the same. However, that day in August when they discovered the first mass was like no other. Cancer is scary, it's the monster everyone fears. But as soon as that news came it was gone....poof! I had surgery to remove it 3 days later. No time to process, no time for anything to sink in. I, in my eyes, was not a cancer survivor. I was merely someone who had cancer all of three days, almost feeling guilty that I had cancer at all because it was so easy. I went about my merry way. It wasn't until my follow-up scan in December that the world as I knew it had changed forever. YOUR CANCER IS BACK. This time it wouldn't be a 3 day turnaround, no picnic, no walk in the park. Now I am in the fight for my life. No one prepares you for the conversations that follow with your doctor. Mortality rate, targeted therapies, clinical trials, life expectancy, side effects, transplant, stages, lifestyle changes, recurrent cancer, and my favorite, quality vs. quantity of life. I am 40 years old with two beautiful sons. My only concern is being here for them.....for a long time. This unwanted diagnosis will just be a part of our journey, not the end.
~ still climbing mountains ~

~ Day 16 ~ Wanted Diagnosis

Many years ago, 18 perhaps, I started to get sick. Nothing too serious at first but enough to start making my college studies hard and life less energetic. I figured the tiredness was from working too much, studying too much and partying too much. The pain must have come from old sports injuries. These symptoms went on for a few years until I got a bad cold. The cold didn't go away and I just couldn't seem to get better. This began 6 months of testing to finally determine I had Lupus. I had never been so happy to hear those words. Yes, happy. I wasn't crazy or lazy or a hypochondriac. There was validation for why the normally vivacious and spunky Sharon was a distant memory. There was something attacking my immune system and I had no control over it. Armed with a diagnosis, I began my research into this disease, reading everything I could get my hands on. I learned quickly that Lupus would become the center of my world that I would dance around for the rest of my life. Lupus presents in many different ways and affects everyone differently. For me, it has been systemic organ involvement, attacking almost every organ, gland, joint and muscle as if they were foreign to my body. Essentially, my body is fighting itself. It started with my thyroid, then the gallbladder, the lungs, the heart and ultimately my kidneys in the form of Lupus Nephritis. The LN basically began attacking my kidneys leaving scar tissue in its wake rendering them more unable to do their job. Over the years, I've had several different treatments including prednisone (thanks 60 lb. weight gain), a lovely chemo cocktail and a radical change in my diet. Over the last year or so my kidneys were getting worse and the doctors ordered yet another ultrasound of the bad boys. And so I went for the normal looksie and inevitable "yep, your kidneys suck" speech. But had it not been for already bad kidneys and the the wanted diagnosis of Lupus, they wouldn't have found the first mass on my right kidney..........so then came the Unwanted Diagnosis.
~ still climbing mountains ~

~ Day 15 ~ Strength

Yesterday the doctor gave me a reprieve on a couple of the meds that make me the sickest so that I could drive up to Salinas for the memorial. However, it came with the promise that I'd pay for it twice as bad today. He did not lie. I had horrible shakes yesterday and was super weak. The get up-sit down pace of the Lutheran church wasn't playing nicely with this combo but clearly I made it through. This morning brought another dosage increase that hit my body like a wave of tar. It rendered me unable to move, the leg pain was so terrible it made me vomit on it's own. I, for more than any sane person should, contemplated what method best to cut them off. I came to the conclusion I'd use whatever was handy. I knew that this needed to pass because I had some dear friends coming over in the afternoon. I mustered my strength to take a shower and approximately 2 hours later, was dressed. I was quite proud of myself but.......exhausted. This is true for everyday since the beginning of treatment. But what is amazing is that my strength isn't coming from within. It's coming from my beautiful friends who bring their energy and their positivity to me every day. Their love is better than any medicine a chemist can dream of. They bring me strength with their stories that make me laugh, make things normal again and give me hope for the future. I have said it to everyone that thank you doesn't even begin to express my gratitude. I hope you all know that you are my strength, my hope, my light.
~ still climbing mountains ~