Blessed Beyond Belief

 

Blessed Beyond Belief
[Original post from Monday, December 15th, 2015]

Completed all my testing for "the spike" (see last post). In doing the testing, we got some unexpected red flags. Some major pulmonary issues are popping back up again requiring me to be put back on oxygen, breathing treatments, inhalers, and ..... steroids (thought I was finally free of those bastards). We go to Big Bear with my parents and siblings for Christmas, and had a scare that with the altitude and my issues, I wouldn't be able to go. It's ok though, and the hospital has been AMAZING. Even with the holidays here, they were able to get all the referrals, testing, and prescriptions rushed and my new portable O2 machine and detection sensor (to monitor my own oxygen levels) arrives tomorrow...can't wait to get that bill!

Psshhhh I got this!

The good news, my heart and brain (considering the amount of toxicity) are kicking butt with no issues, and my kidney and liver testing levels and counts are finally not in the "danger zone" anymore. They're doing a little better. My organs will never be perfect again, but I can live with functioning.

As far as whether this immunotherapy worked enough to get my spike to stay on treatment, I wont know until at least Tuesday. Hoping and praying for answers before Christmas. It's definitely stressful knowing that it's either not working and I'm about to spend my last Christmas with my husband, kids and family, or I'll be partying like a rockstar (a really well behaved goody goody rockstar) celebrating victory. We just stay positive and enjoy time together. I have really enjoyed all the rain this week though, you guys? #letitrain

The waiting hasn't been all bad. Aside from mommy, wife, church stuff, I've been enjoying my job so much. I love celebrating fundraising victories with retail partners. One of our retail partners blew their goals out of the water and broke records. I was like a proud mama hen!

Working and loving it!

I've also been working fervently on everyone's ornaments. Thankful that has been overly distracting in my already chaotic life. I've really enjoyed making each and everyone for you guys, but I'm not going to lie, I have 14 left and then I will never make an ornament again.

I have to give thanks to some INCREDIBLE human beings. In my last post I mentioned Angie reached out through a mutual friend and donated her entire $730 commissions check for the month! Through her, Bettyann's Bag reached out to her wanting to help, and they sent us a wonderful card with dozens of giftcards people donated. People we have never met in out life. It still blows my mind the generosity of our family and friends (especially through church), but when complete strangers want to help, I can't even explain the emotions. What joy!

Then, this past week I spoke at Encounter about victories. It's truly a privilege and an honor to serve. I'm so thankful for Pastor Chase and the leadership team. They're not friends, their family. I didn't even know it was possible to do life like this, these people are the most incredible human beings I've ever had the priveldge to meet. That says a lot, because I have met some AMAZING people. Pastor Chase pushes us to stretch, even when we don't want to. Even if I'm not so comfortable. I feel like I am getting a wee bit better at the public speaking thing though. Only like 100 um's this time LOL.

Love doing life with these leaders. Yes, that's our pastor and fearless leader busting our Spider Man... he's that awesome!

After sharing testimony with 3 other inspiring speakers, the same amazing group that came caroling (and brought Christmas to our door last year), approached me with cards, giftcards, and money. We are so grateful for all of it. This year they went a step further. Amber had asked me what we "needed". I mentioned the only thing we "needed" was eachother. We don't need stuff, we just want more time together. So any things we can take the kids to do or experience together is the best kind of happiness. They really listened to that and gifted us so many fun new adventures to embark on. We got movie passes, a spa day, golfing, Billy Beez, date nights, ice skating, Vasona Lights....the list goes on and on. The opportunity to have memories and experiences with eachother, friends, and family is the most special thing to us right now and we are truly SO grateful and humbled once again by God's goodness and your generosity.

A special shout out to Lindsey who maxed out her platelet donation this year in my honor! You go girl. You're helping SO many people, and I feel pretty special you do it for me.

We're already starting the parties! We used our sushi giftcard. The kids loved it! Tomorrow, Carter is going on a Mommy date to see The Good Dinosaur.

Miso through a straw? Sure... don't mind his edamame shell collection

Through the mass unexpected amount ornaments sold and generosity of others that took our excessive bills off our plate this month, we were able to contribute items to the homeless ministry some of our awesome friends are hosting on Christmas through our young adults at church. We also donated to the Leukemia Lymphoma Society. This really meant a lot to us because we love teaching our kids to have kind hearts and be givers. It's hard to teach giving when you have nothing to give, so it felt really good and we were so overjoyed to actually be able to help others this Christmas as well. It wasn't much, but you do what you can right? See, you guys are the gift that keeps giving!

Got to thank Kandis again for so selflessly setting up meals twice a week EVERY week. It's so amazing to just know twice a week I get to come home from work/doctors to enjoy my kids and not play chef. You're the best.

Now for the kicker. Something completely baffling happened on my last plane ride home from New York. I didn't share right away because I wanted to share it in my testimony first. Now that I did, I can scream it from the rooftops. When I left I had a lot on my mind. Would the piggy back treatment work? What does this mean? How do I tell Cory and my family? Then I was stressing about the cost of moving treatments from every other week to every week.

When I ride on planes I tend to freak people out with wearing a mask or looking half dead, so I try to break the ice with whom ever sits with me. I immediately bonded with the nice lady next to me who I quickly found out was in the last 6 months of her medical school residency. She was a doctor in West Virginia. We shared life stories, experiences, and laughs. Then after a really long flight and a short nap, we arrived in San Jose! Upon leaving the plane, she gave me a little folded piece of paper and wished me a Merry Christmas. As I exited the plane, I opened it (curious what this perfect stranger just gave me... a phone number? Facebook link?). It was a blank check for $1300. WHAT!? Who does that!!?? She didn't even know my first name. I ofcourse ran to baggage claim trying to track her down. I luckily found her and thanked her for being such a good person. I told her I had to ask why? She told me my story really inspired her and she just new she should. If that's not divine intervention.... the crazy part is, I'm pretty sure I just told her my treatments we expensive. I didn't tell her what they cost, so the fact that $1300 is the amount put on her heart (which is the same cost as 1 of my treatments) just gave me chills. I ofcourse was balling in the airport, and walked outside to pouring rain. I hope the doctors keep telling me a cure is more rare then rain in California, sure been raining a lot lately!

Even in the midst of stress and anxiety, I have such a sense of peace and grace seeing what surrounds our family. Thank you and Merry Christmas!

2016...This is my year!! (again)

 

2016... This is my year!! (again)

[Original post from Monday, December 28th 2015]

Per the last post you guys know we were hoping for that spike! I was suppose to get news early last week. After days of waiting I was notified that all my labs hadn't been received in New York and they couldn't give me updates or results without all of them. 12/21 passed, 12/22 passed, finally on 12/23 I was so anxious and frustrated that I threatened to put my oncologists personal contact info on Facebook. Early 12/23 I was contacted by the hospital that my doctor had left the hospital to deal with a serious family emergency, but to move forward with the next treatment and he would be in touch. Ofcourse that just made my mind spin faster. Does this mean it worked so he told me to take the next chemo? Or is he just trying to pass the situation and have me take it as a precaution until he could deal with it? Later in the day I got another message from the office that he would call me 12/24. I did my self injection, still so weird, said my prayers and went to bed.

They say breast milk is liquid gold. This little inch tall bottle with 10mg of "liquid gold" is $12,500! That's outrageous, how to pharm companies sleep at night? Probably on diamond beds with pillows sewn from patients tears (ok that was a little dramatic, but you get the point)

Christmas Eve morning I got "The Call". My doctor expressed that we had a spike (my first response WOOOO HOOOOO!!!!), then it was followed with a "but".... After the second treatment I had only shown a 5% response rate. They wanted a 50-60% response called "the spike". They pressed forward with a third treatment hoping for that response. I had a 36% response rate. This is AMAZING and significantly higher than the second treatment, which means it's working!! The problem is, that the spike was nearly 20% less than they were hoping for to keep course, and the treatments taper off after the spike. So although the treatment is working now, it probably wont be curative and may not even work at all much longer. That part was kind of crappy, but I will take my victories one at a time. We prayed for a spike and got it, so I'll take it.

The doctor's goal was to move me back to every 3 weeks for injections, but for now he wants to stay bi-weekly (ugh $$$) until further notice. I'll get testing Tuesday to see how far the spike dropped and  if there was enough response to approve my next treatment. If the next treatment is approved, I will be back in New York the second week of January for extensive testing to formulate an "official treatment plan" (how long and goals: curative or management). So until then, we will just keep warring, praying, and fighting like hell.

It was nice to spend Christmas in Big Bear with my family! It always takes my mind of the chaos. It sucked I was pretty much glued to an air tank the entire trip, but I'll take what I can get. Between the 3 metastasized tumors and the Bleomycin (and a plethora of other drugs I've been on that attack my lungs) I have developed some serious lung problems. Most people breathe in oxygen and excrete carbon monoxide through the alveoli glands on the lungs. It's called the gas exchange. Well, long story short, Im not converting enough oxygen into my blood stream, and not excreting enough carbon monoxide out of my body at an efficient rate. It's leaving me under oxygenated and over toxified. I'm working with a pulmonary specialist team and they're doing everything the can to better the situation. Until then, I'm the living version of Fault in Our Stars. Can I just say, anyone who is on oxygen, I feel you. Hauling tanks everywhere, dealing with insurance, delivery, the tubes, extra weight... it's a pain in the ass tush. Currently fighting insurance. They claim oxygen necessity isn't covered.... I call BS.

Merry Christmas from the tube

Thanks Mom and Dad for my new bracelet! #su2c

In other news, last Monday was my official last day of work with the Leukemia Lymphoma Society. I'm so super grateful for the experience, chance to feel useful helping others and helping the cause, as well as new friendships. I'm also thankful that they kept me 6 weeks over my proposed temp date. I absolutely loved it! Anyone who needs some part-time assistance, I'd be so grateful! Money is already impossible, so I need to do my part with finances!

Office Tree... So pretty!

All my stores exceeded their goals by A LOT! Woo Hoo! Proud mama hen 

Christmas came to my desk!

Love these wonderful people! Thank you for doing what you do!

Thanks for everything LLS! Excited to continue volunteering until I find other work!

2016 is going to be a year of miracles... it just has to be! Thanks to everyone who prayed, fundraised, donated, helped, supported and loved us through this!

Got to enjoy kiddo time today. Pizza and The Good Dinosaur thanks to church friends giving us movie tickets, and my little brother Justin (and Holly) helping out his big sister to have fun! It's moments like this that make me so grateful for all of you. Thank you for helping us spend quality time together having new and amazing experiences. 

Courageous

 

Courageous

[Original post from Thursday, November 5th, 2015]

Feeling over anxious about starting my 7th (and final) go at a new treatment for this stupid disease. Had to listen to my kids tears tonight on the phone because they don't understand and want mommy to come home. I'm 3000 miles away from them. I have to miss Jessa's 13th birthday. We're getting blindsided with additional costs that we hadn't planned and saved for because we didn't know, and I was was told 3 different times today "oh man, your scans are bad, do they think it will still work?"

Part of me just wanted to throw in the towel. A big part of me if I'm being authentic. It's too much, the boulder on my back is too heavy and I'm all alone. Then someone called saying someone was dropping off food to Cory and the kids, and someone else called saying they were going to babysit and help. It reminded me that I'm not doing this for me, this fight is for all of you. My family, my kids, my friends, my church, and my God. I am not, and never have been alone. I have an army fighting behind me that I am so blessed and thankful for.

Today I got got dozens and dozens of encouraging messages and calls. People in my corner fighting, and pleading, praying, warring. This journey sucks and battles have been lost, but we WILL win this war. Time to search even deeper down and be #courageous. Let's do it.... #Imreadynow #wewar #20soc #stupidcancer #nyc #miracleshappeneveryday #TEAMAMANDA