Wednesday 3/11/20:
-My first dose of oral chemo resulted in a 1AM trip to the emergency room, which I was surprised to learn they now refer to as the ED (Emergency Department). The doctors warned me of the importance of going if I got a headache after taking the new medication. It took about four hours to kick in, but when it did, it gave way to the worst headache of my life. I tried to tough it out, but caved under the weight of it all. The pain was so bad that, as I headed out to the car, I really lost it and ended up "decorating the bushes."
There must have been a note in my file regarding the possibility of my arrival because they admitted and medicated me rather quickly.
I remained in the ED for a long time prior to being wheeled to my room in the Immunocompromised/Cancer Patient wing. Once there, I had a PICC Line inserted into the upper part of my right, inner arm. It was done with precision, using an ultrasound sound machine as the guide and I got to watch the whole process - thankfully pain free. The set up and clean up for the procedure took the most time because they quite literally turned my little room into a full blown operating room with blue drop cloths, sterilization, and lights. It was pretty cool to witness as they fed a tiny, 2 part tube in through my arm, up my chest, and directly into a strong vein or artery in the top of my heart. The PICC Line is designed for long term use and will remain in my arm for the entire duration of my stay at the hospital. It is the conduit through which IV medicine, chemo, and blood transfusions will be given, and has already provided so much more mobility than the IV in the crook of my elbow ever would have allowed. It is such a relief to be comfortably able to adjust my ponytail again!
-It was a rough first night, but the drugs kicked in so fast that I could hardly believe it. I’ve decided not to let anyone visit me because I’m so worried about this COVID-19 pandemic. It's for everyone else’s sake that I say NO. There simply isn't any sense in allowing people to travel to see me when we all carry teleportation devices in our pockets! Thank you, FaceTime.
It's strange to me that there were ZERO symptoms until they started the treatment for this disease I never suspected I have. Now, all the symptoms are hitting hard and fast. I actually feel like a cancer patient and I haven't even known I have it for more than a day - I couldn’t keep a banana down this afternoon and the idea of food, for the first time in my entire life, sounds like a punishment. The worst symptom of all at this point is my headache. It feels like someone cinched the QuailMan belt around my head so tight that my brain is squeezing out through the top. I quite literally feel like this guy 🤯whenever the painkillers start waring off.
Thursday 3/12/20:
Chemotherapy is officially in full swing. It comes to me in two parts; oral chemotherapy and intravenous chemotherapy. Oddly enough, the IV chemotherapy is actually ARSENIC and the oral chemotherapy is a concentrated form of Vitamin A. Hard to believe Vitamin A could have hurt my head so badly. Anyway, my night nurse, is awesome. So far, everyone has been, but this guy is able to explain things to me so clearly. I’m excited to relay what I’ve learned.
APL, what I have, is a subtype of Acute Myeloid Leukemia.
He explained it like this: bone marrow is supposed to make new blood and store the new, young blood cells to be used as needed. The body will send a message saying, “Hey, we need white blood cells for this infection,” and the blood cells are then supposed to mature into what is needed. In this example, they leave to go do the job of fighting off an infection. The body has different requests for different types of cells and these young cell mature accordingly. In my case, a genetic mutation has caused the young blood cells in my marrow to become “little punks“ that refuse to grow up. That means no white blood cells, red blood cells, platelets, etc., to do their important jobs.
I’m lucky to have APL because it means there is only one mutation to overcome. If I had straight up AML, there would be another mutation that made it so the young cells don’t die either and leave the blood completely saturated with these useless, immature cells. He said the healthy amount of the young cells (called blasts) is, for example, between 4 and 11. Patients with AML will come in with over 700 and be left with only days to live. He said a marathon runner might start to notice unexplained bruising and feel short of breath. By the time they come in with those symptoms the diagnosis and prognosis aren’t good. They have to completely wipe out the person's marrow and seek a transplant in order to save their life and get them functioning again.
Because we found this early, I get to just retrain my cells to cooperate!
The reason this is such a precarious balancing act in this beginning, induction phase is because we don’t want all the cells to differentiate (grow up) at once. When that happens, there is a whole host of other issues, like lung distress, that has to be overcome. It could happen at any moment and has to be addressed immediately, which is apparently why I'm now living in the hospital full time. He said he’s worked in the Leukemia/Lymphoma facet of the nursing field for over 15 years. He sees many Leukemia patients every single day and insists APL is very rare. Seems to me, I pretty much lucked out.
Friday 3/13/20:
-I woke up feeling great, only to have the awesomeness compounded by the realization that I was not on any pain killers. I got up did some squats, lunges, wiggles and dance to stay active and hopefully prevent the weight gain they told me to expect with this diagnosis.
Arsenic can affect the heart's rhythm, so I had a heart ultrasound to establish a baseline without ever having to leave my bed!
The afternoon was a bit tough with nausea and the return of that intense headache, but luckily, I was able to sleep quite a bit. They seem to have a medication to counter just about any problem that I present. Very cool. I feel that I am in excellent hands.
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