~ Day 41 ~ Non-celebration

While the news yesterday was fantastic, it didn't change how I felt when I went to bed last night or woke up this morning. I am as happy as you all are for the tumors shrinking but I am left to feel the torture of this treatment. It's hard to be cheery when you feel so awful. I know it's the darkness and loneliness talking. But I go to sleep every night alone, alone with my thoughts and fears. Yes, I have God and your prayers but they're not hugs. They don't wipe the tears away, they don't hold me and tell me everything is going to be ok. It's in the dark every night that the fear creeps in. I feel like it manifests into wicked muscle spasms as if it is truly the monster inside trying to get out. It's in these moments I long for that unconditional love and support that I'm missing so much. This disease breeds loneliness because no one can truly understand what you are going through. I try to explain it and there just aren't words to adequately express how it encompasses you. This is one of those days that I want to scream, kick, punch and let it all out. The storm is raging outside and I want to join it. I hope the rain washes my fears and my loneliness away and the clear skies will bring me a sense of peace. It's a dark day but I know I'll enjoy the sun soon.
~ still climbing mountains ~

~ Day 40 ~ HALLELUJAH!!!

Just got the call from my doc regarding my CT results.  My tumors are SHRINKING!!!!! Especially the one that is in the worst spot to have one.  And the ones in my lungs (which I didn't know I had!!) are GONE!!!  All of this hell I'm going through is working.  It wasn't all great news but who cares?!?  I kind of tuned him out after the words TUMORS SHRINKING!!!  Some stayed the same size (those may need to be biopsied) and it's a possibility that I can plateau on the meds and they lose their effectiveness.  I have a long road ahead but knowing I'm getting somewhere breathes new life into my sails.  Oh my goodness, oh my goodness, oh my goodness! :)
~ still climbing mountains ~

~ Day 39 ~ Big Brother

About 6 weeks ago, we started the process of getting Connor paired with a Big Brother from the Big Brother/Big Sister Program. Within two short weeks, he met his "Big", Jay. They were instant buddies. They totally chatted it up at their first meeting and left with a plan to see each other a few days later. They have spent every Sunday afternoon together since. They've played disc golf, basketball, racquetball, miniature golf, go-karting and grabbed bites to eat. What a perfect match for Connor! He gets to do all those athletic things he loves to do with a guy and not just mom. He's looking forward to going hiking and fishing and other cool dude stuff.

All those activities are great but the real treat is seeing Connor's self-worth increasing. The kid has never had a problem with confidence but more of an internal feeling that he was UNchosen and abandoned by his dad. His Big chose him and is committed to spending one-on-one time with him, sharing mutual interests and exploring new adventures. The one thing Connor asked for was a man he could look up to, learn from and respect. Neither of us could have asked for a better role model for Connor. Jay is a veteran and continues to serve our country. For the kid who goes up to every person he sees in uniform, shakes their hand and says thank you (and buys them dinner!), Jay is his idol. He is laid-back and kind, committed and humble. Connor looks forward to seeing him every week. I look forward to watching their relationship grow and them forging a special bond. What a blessing along this journey!
~ still climbing mountains ~

~ Day 38 ~ Cry Fest

I went to bed in tears last night. Woke up in tears this morning. And cried all damn day. Wouldn't have been so bad if the day wasn't spent at work. I looked like death warmed over and re-fried. I hurt so bad and was completely worn out by 9am. Emotionally I'm finding it harder and harder to keep positive. I have to will myself through each minute and hour of the day more so than ever before. I finally had to have the talk with HR today that this treatment is kicking my butt and I don't know what the coming weeks are going to be like. Hard to be ambiguous but I really have no way of predicting anything. Thankfully, they are super understanding and will be flexible so on that front I have one less worry.

I got smart a few weeks ago and bought the boys some new toys and games. I've been bringing them out sporadically and surprising them. It has proven to be a nice distraction from the day to day ups and downs. I think Bennett spent about 6 hours yesterday coloring with his Crayola Color Wonder stuff. I'll keep these drawings forever. Connor has been fortunate to get to spend 4 hours every Sunday for the last few weeks with his Big Brother Jay. That relationship is growing quiet beautifully.

There's no guarantee tomorrow will be better but at least I know each day prepares me a little more to get through the next.
~ still climbing mountains ~

~ Day 37 ~ Heavy Metal

Never been a fan and not starting now. That's all I can taste today and my mouth is killing me. I made the mistake of chewing a piece of gum and now I feel like I have a toothache in every tooth on the left side of my mouth. Every fiber of my body hurts and I'm exhausted beyond belief. But I was able to get a little sun today and pulled weeds for about 30 minutes (working in the yard is my happy place). I think taking the meds about 4pm will allow me to get through my work day and crash when I get home. I figured if I take them too close to bedtime the pain will keep me up. I'll figure all this out somehow.
~ still climbing mountains ~

~ Day 36 ~ First day of new treatment

I took my meds at 8 this morning and felt good for about 2 hours. I made breakfast for the boys and sat down on the sofa to watch cartoons with them. Not long after, a wave of fatigue swept over me like I had never felt before. I couldn't keep my eyes open. I ended up falling asleep on the couch for 2 1/2 hours. When I woke up every tooth in my mouth hurt and my legs were spasming. Everything tastes weird or has no taste at all and thankfully I'm only mildly nauseous. Not quite sure if this is better or worse that the last treatment but I'm sure only time will tell. I think I'll try taking them in the early evening tomorrow and see if I can just ride out the worst fatigue closer to bedtime. The boys are currently making a comfy place for us in the living room with every blanket and pillow in the house for us all to get cozy and watch a movie. I'm so happy and grateful they are cuddle bugs because we all enjoy this time together.
~ still climbing mountains ~

~ Days 28 - 35 ~ Vacation

No, I didn't have days off from work. There was no Margarita sipping on an exotic beach. But I did have an eight day rest from the medications. That alone was worth it's weight in tequila. I decided that it would also be a good time to take a break from the daily posts and the blog. I suppose I needed a break from reality. Feeling free of the grip that this monster has on me has been the mental rejuvenation I need to fight this next round of the battle.

When you have cancer, almost every decision is based on this fact. I worry about the meds, what food to eat, resting enough, not over-exerting myself, avoiding sick people as much as possible, watching my stress, tests, procedures, appointments and the effect on the boys (something I haven't been able to write about just yet). I took this week to focus on normalcy. We did a little shopping for Connor's Outdoor School trip coming up, ate out a couple times and visited with friends. I even found a couple vintage pieces to add to my ever expanding collection of things to redo when I'm back to normal. Matt and I enjoyed Valentine's Day, sleeping in Saturday morning and lounging all day watching movies. It has been a great week off in that regard.

Tomorrow begins the new treatment regimen. I'm apprehensive at best. The unknown is the scariest part of all this as I have no idea what my tomorrows look like anymore. I do know this one will be tougher than the last but I am strong enough to handle anything. When strength is the only option, you find out what you're made of.
~ still climbing mountains ~

~ Day 27 ~ Off to see the Wizard

Today I had an appointment with my nephrologist (the Wizard).  Yeah, I really call him that.  Everyone has a nickname in my world.  I was apprehensive going into today because I knew it wasn't going to be the news I wanted.  That instinct proved to be right.  The treatment that I was doing was Phase I of a clinical trial I was to enter into Phase II in mid-March.  My team feels that the damage sustained by my liver in the almost 4 weeks I have been on it has proven too risky to continue.  Of all the pharmaceutical approaches possible, only one remains suitable for me.  The risks of the others exceed what I am willing to accept.  I am out of the clinical trial altogether now.  That also means I have to pay for the treatment now. :(  The great news is that I have a 9 day reprieve from all medications before I start the new stuff (just when I was getting used to the vomiting, bathroom issues, and no appetite).  It is hard to be back at square one but I know that this is for the best.  I'm also somewhat relieved I won't be a guinea pig for science although it would have been pretty cool to be a part of creating a new new drug therapy.  Oh well, next time!
~ still climbing mountains ~

~ Day 26 ~ Devil is in the Details

I have been asked repeatedly why I haven't shared the specifics of my treatment like which medications I'm taking, who is my doctor, surgical options, transplant, second opinions and natural approaches taken.  The simple answer is:  I don't want to talk about it.  If I were to share the details it inevitably leads to someone commenting: My Aunt Sally on my dad's side had cancer and they tried this, that and the other thing and it worked great (or she died.  I get that a lot too).  Each person is different.  Each cancer is different.  Type, size, location, stage, and other medical issues are all factors in determining a course of action.  Your medical history and current state of health also factor greatly.  The decisions about my treatment are made after careful analysis by my entire medical team and me.  I have been fortunate that my doctors also consider quality of life highly important as well as quantity.  While I appreciate all your comments, public and private, I don't have any intentions of discussing the details of my treatment.  I wholeheartedly believe that everyone's experiences are different and I don't want to endorse or detract from any treatment that may work for some people.  So, no arm-chair quarterbacking unless you have M.D. behind your name.  That being said, chances are if you're sitting on my sofa with me having some tea, you'll probably here all the gory details because I know you can handle them and I trust you.
~ still climbing mountains ~

~ Day 25 ~ "Served" with a smile

I ran into a friend in the store who heard that I had cancer. After exchanging the normal brief pleasantries and updates on kids and jobs, she asked when I started treatment. Normal question. I answered, just over 3 weeks ago. What followed completely astonished me: "Well, the cancer must not be too bad because you haven't lost your hair yet, you're still working and you're able to go shopping. So why do you have people bringing you meals?" 
I took a deep breath and exhaled with the following in a cadence that rivals the best poetry slam:
Now let's just break down your comments one by one.
1. The cancer must not be too bad - Cancer is bad. Yes, there are different stages of cancer and different treatments, but it's ALL bad. I don't wear my stage like a rank on my sleeve as if this hierarchy garners more respect as I earn my stripes. The idea that you could even put those words together, cancer and not too bad, makes me happy you are not in my support circle.
2. You haven't lost your hair yet - Yes, thanks for noticing. Did you happen to see that it's losing pigment and I'm afraid to dye it because it surely would fall out then. I am not on chemotherapy, yeah not the cure for all cancer, but the drugs still can make it fall out. I haven't decided what to do with my hair yet because I have bigger things to worry about like my will, my kids needing their mother, etc. But thanks for noticing.
3. You're still working - Damn straight I'm still working. Do you know how expensive cancer is? I'd love to stay home and take care of myself but I am my only source of income and health insurance and those $800 in meds every month don't pay for themselves. How's your part-time job so you can go to Maui every year treating you?
4. You're shopping - If you call Target at 9pm to avoid the crowds that can make me sick to buy TP, toilet bowl cleaner and disinfectants shopping then yes, I'm shopping. I spend a good portion of my day, while not at work, in the bathroom getting sick or eliminating the only food I could tolerate that day so I try to keep that area as nice as possible. I see you get to shop for that fine boxed wine in your cart. Have fun with that!
5. Why do I have people bringing me meals?: (Huge inhale) You see, I spend my energy fighting my cancer that is that bad, not worrying about my hair but whether or not I'll get to see my kids grow up, I go to work because I have to, and for goodness sake, life's responsibilities don't take a break for cancer. My friends aren't just bringing me a meal, they are providing love, friendship and above all, support.........(exhale...SMILE).........I hope you know that I will be the first person on your doorstep if you ever hear that diagnosis. I will bring you a meal or five. I'll tell you that no matter what happens with your body, you're still beautiful. I'll marvel in all that you manage to get done in a day with or without cancer. And I'll shop for your TP cuz you're gonna need it! Enjoy that boxed wine.
~ still climbing mountains ~

~ Day 24 ~ Perspective

“We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” ― Abraham Lincoln......I can't tell you why I feel the latter about having cancer. About life, really, in general. I have had enough bad things happen in my life that any one of them could have destroyed my spirit. I simply don't believe I was put on this Earth to suffer. I've failed, I try again. I've been abandoned, yet I trust again. I've been hurt in love but I still love with my full heart. I can't see what's around the next corner but I have faith to continue to walk the path. We can waist so much time waiting until our perspective on a situation is just perfect and miss the beauty right in front of us, or we can open our heart to love and the rose on the thorn bush. Don't wait until you are faced with life or death to finally change your perspective on what really matters. Rejoice in the blessings and love you are surrounded by.
~ still climbing mountains ~

~ Day 23 ~ Makeover

So when I beat this cancer crap I want a makeover! This disease is taking a toll on my body, inside and out. The disease and meds mess with your hair, your skin, your nails, and your weight. It's not a vanity thing as much as it is a constant reminder that you're not well. It also takes a little of my defense mechanism away. If I look ok then I can fool the world (and myself) that I am ok. When I'm healthy again I just want the outside to match what I feel on the inside. I want something different because I have been forever changed by this disease.
~ still climbing mountains ~

~ Day 22 ~ Help

I could not have gotten through today without a huge amount of help. Matt and Raiden were here at 7:30 to take the boys to Connor's basketball game. Matt called me on Tango and videoed the whole game so I got to see it live!!! Even saw Connor make his basket. Then this afternoon, Lisa and her family picked the boys up and took them to see the Lego movie. What a thoughtful thing to do. I got to actually take a nap. And huge thank you to everyone who has brought food over, visited and lifted my spirits. Your kindness and generosity is overwhelming and extremely appreciated. i am so blessed to have friends like you. xoxoxox
~ still climbing mountains ~ 

~ 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 ~