Anti-PD-L1

A lot of people have expressed curiosity about the new clinical trial I am participating in. It's definitely pretty interesting, so I would like to share what I know. Essentially, this drug is different than traditional chemos. Traditional chemotherapy goes after attacking the cancer for you. But it can be also more toxic to healthy cells as well. That's why there are such harsh side effects and why certain drugs have maximums. while they go after the bad guys, sometimes the good guys get whacked as collateral damage. So why is anti-PD-L1 different? Well, it probably makes sense to first explain what PD-L1 is in the first place, and then what the "anti" part is all about. PD-L1 is a protein that is found on the outside of tumor cells. It kind of acts like a protective coating. It renders the tumor cells somewhat invisible to the immune system. It was also described to me as a protein that puts the immune system killer cells to sleep when they come near it. The Anti-PD-L1 basically attaches to the tumor cells and flags it for the immune system, so it knows that the tumor is a bad guy and the killer cells should go after it. I described it to my husband as basically slathering up the tumor cells in barbeque sauce or something like that, making it more appetizing for the immune system. So the more PD-L1 you have in your cells, the more effective the anti-PD-L1 will be. As far as the regimen itself, it is given every other week through an infusion. Because it is not cyto-toxic, the side effects tend to be very mild. My experience is I feel a little funky, but nothing to write home about. It is definitely WAY better than chemo! From what I am hearing from people in the medical and pharmaceutical worlds, if the drug works on a person, it works incredibly well. They say results are rapid and durable. Certainly a good combo! In the land of advanced cancer, stable tumors are good news... In this new world, they are not only seeing stability, they are actually seeing tumor shrinkage. It has even taken some severely advanced cases right into remission! Pretty amazing! Like anything else, it doesn't work for everyone and it doesn't work on every kind of tumor cell. So now, we wait, and we pray that I am one of the lucky ones. It's in God's hands now.

and such is the roller coaster ride we call cancer.

I had my most recent scans earlier this week. My doctor doesn't usually like to go through that stuff over the phone, but I told him I wasn't capable of waiting a week. He agreed to call me when he had news. So the waiting started Tuesday. When I realized I would have the results quickly, the panic started. You learn that anything is possible with scans. That's the reality. Good news, bad news, in-between news... Anything can happen. Steve was sitting next to me when the realization hit that I would know soon what the last three months has done for or to my body. He looked and me and said "take a deep breath". I looked back and said "I have to breathe first... then I can take a deep one". Fear is like that. It can literally knock the wind out of you. But breathe I did. So yesterday morning, as I was pulling into my son's daycare, the phone rang... Hackensack... Shit! I couldn't answer it there. My oncologist is important, but getting my son safely to school and not having him with me when I have the potential conversation is more important. Sorry Doc. I love ya, but the kid comes first. So I ignored the call at the moment. I waited until I was safely in my office at work with the door closed. I called back... He answered, and I could read in his voice that not all was perfect, but it didn't sound too devastating either. He said "this is a good news/bad news call". ok... I never like the bad news, ever... but the fact that there is some good news sounded promising. He proceeded to tell me the good news. The CT scan was no longer detecting the previously seen lung spots. ("what??? did he just say what I think he said?") Then he proceed, "the bad news is, it looks like the liver is getting worse. no new tumors there, but what we know about is growing a bit." ("shit"). So the rundown is this: The lungs are substantially better according the ct scan. the report actually said that they had resolved... i.e. undetectable! We keep our fingers crossed that the pet scan well agree with that assessment. I have learned never count all of your chickens before they are hatched. The liver is pissing us off. (which really is irritating considering I haven't had an alcoholic beverage in over a year and not even a single Tylenol in over 6 months... So I didn't even earn that. sigh) He wants to have an MRI of the liver done so that he can get a better look at it and see what is going on in there. In other news, the lymph nodes have reduced in size, which is always a good thing. and my tumor markers (think of them as kind of like cholesterol for cancer) went from 1800 in November to 1300 in January to 1000 on Tuesday... so that is a good trend. Also notable, the liver function tests are reading pretty much normal at this point, so that's a good thing. There's something in there, but it's not messing with things too badly. Overall, some pretty decent news. So what does it mean? well, we don't exactly know yet. I may be switching treatment again pending the MRI. This drug was pretty manageable, so it's always a bummer to come off of something that worked nicely and was reasonable with side effects. but if it didn't totally work, well then it may be time to move on. plus, we always can go back to navelbine if need be. I am grateful for the help it has provided to me thus far. Here's the deal. Metastatic cancer is a rollercoaster ride of grand proportions. It makes kingda ka look like the kiddie rides on the boardwalk. It can be scary, thrilling, nauseating, gut wrenching and joyful, and is as unpredictable as can be. You hang on for dear life, and keep on fighting. That's really all I can do.

12 days of chemo

As some of you may know, my family has a tradition of singing the 12 days of Christmas at some point over the holiday. I am pretty sure that it started years ago in Carlstadt at Carol's house. It's been ongoing for years, and brings lots of fun memories. Like the time Grandma Carrie (God love her) kept forgetting what day she had and would just giggle when it came her turn. A new generation of the family continues the tradition and now my nieces and nephews have since joined in the fun. We have taken to modifying the lyrics to add to the holiday sillies. Having had chemo today, an idea struck me... I am happy to share with you the 12 days of chemo. I hope it brings you a smile, especially to my survivors sisters. As the song can be quite long, we will just start from the 12th day and work backwards. On the 12th day of chemo, my doctor gave to me: 12 counts of blood cells 11 nurses cursing 10 ports to access 9 checks of vitals 8 pills of zofran 7 veins a-warming 6 wigs a-spinning 5 siiiiiideeeee efffeeeecccctttss 4 combo drugs 3 sets of scans 2 perky boobs and a benedryl iv naaaaapppppp

Stuff I have learned

This journey is an ever-evolving educational experience. I thought I knew so much about life, but I keep learning more. I am sure that there is much more I haven't even come across yet. First off, I have learned that just because you might have a horribly crappy day doesn't mean that the next day can't be decent. I've learned that even if you don't get your way, you can still smile and have fun. I learned that even when you want to crawl under the covers, the best thing to do is to keep walking forward. Sometimes, you might be able to run. Other times, you might just limp along. But you have to keep going. I have learned that sometimes the only way to gain true perspective is to go through painful experiences that open your mind and your eyes. I have learned that the squeaky wheel does get the oil, but it gets the better quality oil if it squeaks politely. I have learned that most people are immeasurably kind when they put their minds or rather their hearts to it. And when they are not, it is usually not intentional. It's so important to keep hope. Keep positive. The reality is that there is no crystal ball. So while things might not be what I want them to be at the moment, that doesn't mean they can't improve. I have learned that some people in worse situations than me have improved and done well. Why not me? I can't think of a reason. So I will keep moving forward. and trying to enjoy as much as I can until the day when I have the joy in my heart knowing things are better.

Giving thanks...

I had hoped to wake up this morning to have a different set of circumstnaces to be grateful for, but alas, I don't make those decisions. The decisions I make are what I do with the situations presented to me. So here goes. Today, I am grateful for resilience. The ability to catch my breath again after the wind has been knocked out of me time and time again. Knowing that hard times come, but the intensity of the emotions surrounding them can fade in time. Life can look and feel a little bit more normal then. I am grateful for options, that as much as I could see the pain and sadness in my doctor's eyes, not all was lost and he could offer me more. I hate bad news, but if it is followed by a plan, then I can handle it. I am grateful for love. It manifests in so many ways: through outpouring of support, through quiet tears, through a big tight hug. It is the devotion of a husband who feels like life just isn't fair, but he lives it with me and makes the best anyway. It's in the eyes and smile of a child who has no idea what is happening, but just knows how to love so deeply. It's in the hearts of the parents that keep getting broken and put back together with crazy glue and hope. I am grateful for holidays. It gives me a chance to be with the family I love and focus on something other than this. I am also grateful that I don't play football because my family is crazy, and cancer or not, they would break my fingers to pry the ball from my hand if I played. They show no mercy ;-) I am grateful for faith. It helps me to believe there must be some rhyme or reason to this craziness, especially when I can't see or understand it myself. It pushes me forward and keeps me trying harder every day. It helps me believe that if I don't give up, amazing things will still happen. And it helps me know that I am never, ever alone.

what is your problem??

Seriously cancer, what is your problem with me? I don't get what your issue is. Are you pissed that I keep vowing to beat you? You are one fierce competitor, I'll give you that. The crap you pulled on me this week was pretty obnoxious. You play dirty. I need you to understand something though. I am not planning on quitting. I just don't work that way. I am pretty persistent. I just think though it is not right what you are trying to do. Do you realize how many people you are hurting? Please leave me alone so my loved ones stop having heart ache... And to be a little selfish, I'm really over you and your drama. Cut the crap. Suck up the infusion and die. Leave me the hell alone.

Happy Anniversary!

“I, Nicole, take you, Steve, to be my husband. I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.” 9 eventful years have gone by since I spoke those words, and we still try to live them every day: the good times and bad, in sickness and in health. Granted, we have had a lot of ups and downs and have had to put our vows to the test more than most do in the first 9 years, but we have had some amazing times too. Nine years went so fast, but when I stop and think of everything we have seen and done, we have crammed in some pretty impressive stuff. Here’s the happy recap: • 5 cruises • 4 Disney trips • 1 trip to Aruba and 1 to Puerto Rico with wonderful friends • 1 amazing, beautiful, stubborn child • 1 natural disaster • 3 mailing addresses • 1 mortgage • 7 surgeries (and no, they were not all mine) • Hundreds of thousands of miles racked up on vehicles • 6 vehicles • 3 new godchildren • 1 dream come true in “the Mr Beaumont” • 1 Master’s degree • 2 t-ball seasons • 14 weddings which we attended as guests • 10 baptisms • 7 job changes • 1,000,000,000 laughs • 999,999,999 tears • 1 shared anniversary with amazing friends • 2 wedding solos sung by Steve • 1 anniversary spent in the emergency room watching Harry Potter • 4 Easter egg hunts at the farm • 3 speeches about cancer • 1 big fierce, ongoing, team-effort battle against cancer • Hundreds of hidden Mickeys • 2 best friends, life partners • One love Thank you Steve…. For all that you are, but for mostly, being my home no matter where the roads may take us. And to our wise-ass best man, NO these were not all up north! ;-p