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.