Hello Internet,
I am writing this later than I would have liked, and so I might make it shorter than I would like, too. Normally, I write for the blog on Mondays. Last Monday, I came home from the hospital after Monkey’s first stay. Today, I have come home again because she was unable to make it two weeks at home before running a temperature.
Before I explain everything that happened, I want to make it a point that I am no medical expert. I am, in fact, just kind of a goob who is trying my best to see my way through all of this chaos and keep my spirits up. The Bad News Blogs are a way of me keeping up with myself while going through all of this, and it has been a long week, so there is a lot for me to process. So, anything I type here is the truth as I understand it but may not be the actual truth. Please, take the word of your doctor over me, and if you are feeling uncertain about your doctor, seek out another doctor and fast.
So, last Thursday, Monkey was looking pale and acting ill. She spent most of the day sleeping, like she did when we got her leukemia diagnosis to begin with, and I began to worry that the cancer was spreading back into her blood. After a day spent sitting in a low grade fever, I called her nurse practitioner, Koala, and we were told to come back. After that, Monkey wasn’t allowed to leave.
So, as I understand it, the cancer fighting cells in Monkey’s body are called ANCs or Neutrophils. The neutrophils are microscopic little warriors which fight off the cancer, but when the cancer first arrived, it killed them off in the blood and in the marrow. When she arrived at the hospital for the first time, her neutrophils were zero or close to, and the cancer was winning. It should be kept in mind that these are averages per how much ever blood is drawn because it is impossible to look at all of her blood, obviously.
There are a lot of numbers to look at to determine Monkey’s health. There are white blood cell counts, red blood cell counts, platelets, and the neutrophils, which I think are actually made up of some of these other cells. All of these were dangerously low when Monkey first went to the hospital, and all of them stay dangerously low through chemotherapy since chemotherapy kind of targets all of them alongside the cancer.
Every Monday, we do chemotherapy. The point of chemotherapy is to kill out the cancer to make room for the other cells to repopulate, and as those cells repopulate, they can help fight off the cancer for good. We do about six months of intense chemo and then a year and a half or so of what is called maintenance to keep it killed, and then remission. If she makes it three years after that, she will have a 98% of never getting cancer again.
Right now, she has no cancer cells in her blood. They have all either died or retreated back into her bone marrow, which is a good sign, but her immune system is low due to her low neutrophils and she is susceptible to injury due to her low platelet counts. All of this adds up to her getting sick and injured easily, and as nurse practitioner Koala says: “Her greatest threat is from the germs on her own body.”
Fevers are a big deal when it comes to cancer, especially during chemo. Her body doesn’t have what it needs to fight off sickness, and so we have to be careful about her getting sick. She went to the hospital sitting around 100.4, which is when we’re supposed to call. She arrived at 102 less than thirty minutes later. That was on last Thursday, and I am typing this write now on Monday night.
Noodle and I have been taking turns with her. This time, we’re doing a rough 48 hour shift. Noodle prefers it, I think, but I don’t. On my first day home, I ran out to see them at the hospital and have lunch with them because I missed them. I also had to clean up a watermelon I had bought to cut up for Monkey, who loves fresh watermelon. It had rotted and exploded, spilling what smelled like wine all over our freshly cleaned counter. It was and has been a lot.
The good news is that Monkey should be coming home tomorrow. Her neutrophils are still low, and she has had her chemo today, but they are sending her home with antibiotics to fight anything that might get on her while she recovers. We will be back next Monday for a bone marrow biopsy to determine if she is fit to start her next stage of chemo. We are worried, but we will be happy to have us all home as a family.
She is starting to lose her hair now. It is falling out like cat fur and clinging to everything. I’ve come home and found it all over me, on my shirts and clinging to my hair or hands. I’ve gotten it stuck in my mask. It is, honestly, the least of her side effects but is it the most visible outside of the shivering. It is hard, but so far she is still smiling and laughing about it like she does everything else. It is hard, but it helps me remember that as a family we can get through anything. When it rains, it pours, and look as us here huddled together underneath our little umbrella.
There’s nowhere else I’d rather be.
Sincerely,
RWS
P.S.
No Short Rest update this week. I've been having trouble with some executive dysfunction this week and am in the midst of trying to find a system where I feel...good? I was on an ADHD med for a while, but it was preventing sleep. So, now I'm not, and I keep forgetting my anxiety meds. I'll talk about it another time.
No comments:
Post a Comment