This journal is so long overdue. My huge, huge apologies to friends and family members who have reached out for updates on my sweet mama, only to be met with no response. There have been so many new twists and turns on this roller coaster with cancer that have popped up over the past weeks, and to be perfectly honest, our heads have been spinning. We have all just been trying to process it all. I will also absolutely cop to straight up avoidance on my part. I am in no way trying to keep anyone out of the loop; it has just been a major challenge to sit down and force myself to sit with the realities off all of this. That said, please don't fire me as a point person. Anyone who would like an update on mom is always more than welcome to reach out. Also, please know that all of the kindness and love has been deeply felt. We have such gratitude, and we love you. That said, mom's story kind of long with some twists and turns, but here goes....
Rewinding to just after mom's 68th birthday in September 2015, we all had miserable colds, because, toddlers. One by one, we all moved past those colds until only my sweet mama was still suffering. After a few days, she started to notice a heaviness in her chest. Our immediate thought being that she had pneumonia or bronchitis, she and my dad hightailed it on over to the local Medpost Urgent Care. Once at MedPost, mom was put through the usual exam and also had an X-ray. The X-ray revealed a massive pleural effusion (fluid on her lung) on one of mom's lungs. From there, she was sent directly to the ER for additional testing and was subsequently admitted. The next morning, we met a very nice Pulmonologist who performed a pleurocentesis. Speaking privately with him outside of her room, I asked him to honest with me about his thoughts, and he was quite certain that mom had stage IV Adenocarcinoma of the lungs. The official diagnosis came several days later, and we were referred to an Oncologist.
Since the beginning of our midadventures with cancer, mom's Oncologist has left her diagnosis just a little bit open ended. There has always been some sense that mom's particular presentation and test results didn't quite fit perfectly with lung cancer. There are several reasons for that, but in the interest of brevity, let's just say there's always been a shadow of a doubt as to whether lungs were actually primary. However, after multiple PET scans, CTs, MRIs which showed literally nothing anywhere but in the lining of the lung, we eventually settled in on the conclusion that this was probably lung cancer. If it walks like a duck, and it talks like a duck...
From there, mom went through chemo, lost her hair and rocked several wigs before unfortunately melting one of them through a misadventure with an oven while baking cookies. Oops. After that, she decided to rock her naturally beautiful hair, and all was right with the world for over two years. We were all cautiously optimistic that we were finished with cancer. Then, just before Thanksgiving 2017, mom started to feel the heaviness again, and sure enough, her cancer was back. She spent that Thanksgiving in the hospital, and she underwent a surgery to minimize further fluid accumulation. She then resumed chemo, but this time also with the assistance of an immunotherapy called Keytruda. And for awhile, all was right with the world once again, and against all odds, mom came through a second bout of treatment relatively unscathed. Which leads us to where we are now.
Back in the winter, mom had one of her regular scans. It showed some very small nodules on her lung. Her Oncologist was not overly alarmed, since her immunotherapy can cause pseudo progression (basically a side effect of the immunotherapy in which nodules may appear to grow). Unfortunately, several weeks later, we learned that it was not pseudo progression, but rather mom's cancer had metastasized to multiple organs, including ovaries, liver, brain and peritoneum. Because of the presentation not exactly fitting with the expected path of lung cancer, the suspicion became quite strong that her cancer had actually originated in the peritoneum. This was later more or less confirmed by a blood test that shows levels of a tumor marker called CA-125 that tends to be elevated in Primary Peritoneal and Ovarian cancers. Mom's levels of CA-125 exceeded 2000, which is quite high. For you non-sciency folk, the peritoneum is just a membrane that covers a whole bunch of different organs in the abdomen/GI areas and also the ovaries. Primary Peritoneal Cancer is, while not technically a type of ovarian cancer, classified and treated as such, since it is virtually indistinguishable from "normal" ovarian cancer pathologically. It is relatively rare, and the truly unfortunate part (among many unfortunate parts) is that it is not generally visualized on scans until it becomes very advanced. Mom's scans have not shown any evidence of malignancy in the peritoneum until now.
So. That's where we are. Mom has resumed chemo and may end up being able to explore some alternative options as well. She has undergone Cyber Knife radiation on 4 malignancies in her brain. Chemo has been much, much more difficult for her this time, unfortunately. She is quite fatigued, has had beastly GI issues, has already suffered complete hair loss and has been spending most of her time in bed. Despite all of that, she is still the same ridiculously sweet, kind and loving mom, wife and Nanny. We are doing our best right now to find things that will not negatively affect her from a GI standpoint, and right now, that's one of the biggest challenges. She has become lactose intolerant and cannot tolerate any high fiber foods. It's ridiculous, and it sucks, and we are really hating cancer and its brutal and unjust ways right now. We are, though, still loving each other with all of our mights and trying to present with each other and with the overall goal.
