So I started this out more like a diary of the week days during my 24 weeks of chemotherapy. But honestly, that is kinda boring and whiny. At the moment, having just completed my second chemotherapy treatment this morning, things are pretty good and I expect that to continue.
Here are the basics of the first (and I expect second) week. I had trouble sleeping the night before the chemo appointment- nervousness about side effects, worry about not hearing my alarm which went off at 3am to take some anti-nausea meds before the big day, and worry about big needles hanging out of my chest. My blood pressure was off the charts so they had to take it a couple of times to see if it would go down. Six (6) vials of blood out of my “port” before the “pre-meds” and then onto the chemo drugs. All on a very slow drip to be sure I do not have an allergic reaction. Apparently that is kinda common. For the first treatment, I was there from 8:30am to about 2:30pm – LONG DAY!
So, the port (have I already explained that?) is kinda creepy. A little button thingie with a catheter that is implanted in a pocket created just under the skin (GROSS) on my right chest. The catheter is also shoved just under the skin up to my collarbone where it then meets a major vein to give it a great pathway directly into my heart. YIKES!!! Sounds scary and gross and uncomfortable right? Well it was the part I dreaded the most, and may be the part I now like the most. It did hurt for a while and still is a bit uncomfortable when I sleep on that side, but it is also great, convenient and fortunately, working well. Imagine having an IV, but you don’t have to worry about the stick each week AND YOU CAN FULLY MOVE YOUR ARMS!!! Someone told me it was gonna be my best friend and I should name it. Hmmm – Portia De Chemo? NAH Wait…I’VE GOT IT!!! Say hello to URD! I looked up names that mean good fortune and there is one from Norse Mythology. It is the name of one of the goddesses of destiny who spin the threads of life and measure a person’s destiny, and decide fate. My port is named – URD! Perfect for a gross little buddy right!
Pre-Meds are a fun little cocktail of steroids, anti-nausea meds, and antihistamines. Probably the one I remember most is the steroid that the nurse said would make me feel like I had “ants in my pants.” I didn’t know it when the nurse said it, but that was a literal description of what the drug felt like!!! After they are done giving you those, they move in to the heavy drugs! I think I told you I am participating in a study for Triple Negative Breast Cancer (TNBC) patients with 2cm tumors who are “young” – in terms of the disease at least. While most with TNBC patients start with a combination of Adriamycin and Cytoxin and end with a drug named Taxol. For my treatment protocol, I am starting with three meds; Taxol, carboplatin and Keytruda/placebo. No one knows which one.
The other thing you HAVE to know about is how they torture you when you take the drug Taxol. This drug has a nasty habit of causing painful neuropathy in your hands and feet. Their answer – frozen booties for the feet and and two bowls of ice chips for the fingers. The standard time for the infusion is 1 hour. I thought I could handle it, but the pain was worse than being outside playing in the snow in socks for two hours. Remember when we didn’t know better and snow was so rare in Texas we would be out for hours and then have to peel the wet frozen socks of of our red aching toes. I ALWAYS came in crying because I stayed out so long. This is EXACTLY like that! My toes hurt most of all and no amount of movement could make it stop. In the end, I was only able to handle the booties for about 15 minutes at a time. At today’s treatment I was actually able to keep the booties on until they were too warm and needed to be changed out – maybe 30 minutes. I only took a 10 minute break and then finished the hour! I’m kinda proud of that!
The rest of week one goes like this: day two feels a lot like day one except the steroids have worn off so not so full of energy, but still strong and good. Day three and four the fatigue sets in. Napping and moving pretty slow on those days. It was cloudy here during the week so I felt depressed and sorry for myself…And then I got mad at myself! (More on that in a sec.) Days five, six and seven are working back up to feeling basically normal. Besides the fact that you are flushing your pee and poo twice with the lid closed to get the poison away from your skin. And that you are documenting every little ache, pain, heartburn, nausea – or was that just a burp? It’s all pretty standard stuff really. I am happy with how things are going so far and can still do all the things I love to do – clean the kitchen, do the laundry, vacuume the house…crap! I don’t love that stuff, but it does make me feel better to do normal life stuff.
Now on to my ANGER!!!
Wednesday was an absolutely horrific day. My personal sadness about how unfair it is for me to have cancer is absolute crap when 17 families are mourning the loss of their family members – 14 CHILDREN!!! I am so stinking angry. Our government needs to stop preaching from their soap boxes about party beliefs and rights and whatever and ask the hard questions, get uncomfortably close to the opposition and WRING OUT A SOLUTION!
My cancer is manageable, heck, I feel pretty confident I’m gonna eradicate the buggers from my body never to be seen or heard of again. I have oodles of support, I have a good, proven plan + I’m helping to test some exciting possibilities for the next generation, I will have ups and downs. Monthly, weekly, daily – heck, sometimes minute-by-minute! But others have been here before me. The path is laid out, clear and ready for me to walk it. I need your prayers, but please also pray for those who have worse fates than mine. Pray for broken families with children and parents taken from this earth through the evil actions of others. Pray for those who knew there was danger, but not what to do about it. Pray for those who gave shelter to the innocents and the guilty. Pray for our country’s leaders tht they find the courage to break from their monetary idealistic chains and can find the truth. AND most importantly forgive them their misteps – forgiveness may allow them to move past their scripted path and forge a brave new one. Give them the willingness, the logic, the patience, the compassion, the forethought to look beyond their personal desires and to put in the work to make the solution to gun violence as big a priority as tax cuts, healthcare, and that damn wall!
Peace, Love and Laughter Ya’ll!