As much as we hope that a treatment will last forever, it usually doesn’t. I have been lucky -- two out of the three treatments I have done have held strong for about eight months each time. But three treatments in less than two years can be discouraging because I will run out of treatments soon, unless more funding goes toward research for metastatic breast cancer.
The week in between Christmas and New Year’s I experienced body spasms but had no idea what caused them. I feared progression. I have been on this type of chemotherapy called Erublin since August 2017 and hadn’t experienced these side effects before. Since, when my cancer decides to progress it does so quickly, we pushed for a CT scan. Nothing. The scans showed nothing, which in cancerland is good news. The symptoms kept coming, with more intense spasms followed by a break. After the third round of spasms, I started to get sicker, nauseous, tired, weak and having immense ongoing liver discomfort and spasms. We hoped to not need to scan till the end of March or early April, but last week we got in the car and went up to Dana Farber for imaging.
Usually, when we go to Boston we make it a little special; we at least go out to dinner, but I felt so sick and nauseous the idea of doing anything other than laying down in our hotel room felt impossible. Sleeping has become an on-going challenge because once the medication wears off the discomfort and/or pain will wake me up and falling back to sleep can feel like a coin toss. Heads you will fall back to sleep, tails your loss. It usually falls on tails.
Tuesday morning we head to Dana Farber, nothing has changed; I still felt really bad. I kept trying to put one foot in front of the other, keep my head up so I wouldn’t lose my balance and keep an escape route in mind incase whatever sat in my stomach attempted to come up. As I wait after my scan for the nurse to “de-access” me -- that’s what they say when they need to remove your port needle in your chest -- my symptoms are getting harder and harder to hide. I sat in the hallway with my head against the wall as I listen to this older woman complain about routine annual tests and her hatred of needles. I thought about the time when I was afraid of needles, but can you please hurry up before I throw up all over this hallway?!?! More and more I listen to how small some people’s big problems are, but I remind myself I’m happy you don’t know my problems as I hope fewer and fewer people ever have to walk in my shoes; but hurry up!
After getting de-accessed Martin and I ventured upstairs where we play a game like I’m a 2-year-old; What do you want to eat? Nothing it’s okay…. Open up, you gotta eat… zoom zoom take a bite. Being 2 must have been so fun -- you didn’t even have to worry about feeding yourself. After a successful six bites we went upstairs to get my results. As normal, someone calls me in to get my vitals. How are you? OK, can I have a throw up bag and has anyone reported that the building keeps shaking? They really should have that looked at. Before I knew I was rolled into a private room because apparently the ground wasn’t shaking and throwing up isn’t a good thing. I felt so sick.
Soon after my doctor enters my room and gently gets straight to the point: Larissa, it’s progression and the reason why you feel this way is because of your liver. I felt so miserable I couldn’t cry or feel upset. I just begged for whatever could make me feel better right now. She explained we really need to discuss trying a new treatment today. New chemo right now? In cancerland you want to fight back as fast as you can so it can take effect and potentially you start to feel better again, so I said let’s do this. They first started with Ativan, which can help with nausea (but with less risk of constipation), then a huge bag of fluids which is a godsend, followed by my new chemotherapy: Doxil.
Doxil is administered once a month and is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. It is the drug doxorubicin encapsulated in a closed lipid sphere (liposome). Doxil is classified as an "anthracycline antibiotic." That couldn’t have possibly helped you understand because I don’t even understand it!
After Dana Farber helped put me back together again, the next day was not a walk in the park, but I wasn’t expecting to feel 100 percent; I just started a new chemo and would still have all these liver side effects until the new chemo kicks in. WARNING: There is no promise this chemo will work. I’ve been very fortunate that all the chemos I have taken have worked but it wasn’t promised. I will feel like crap until this chemo starts to work, if it works.
Larissa feeling like crap means:
I will rest a little more, I will do more from my chair and bed but I will not stop. I have exciting MBC stuff approaching and intend to keep it up. Martin and I plan to swing down to Florida in a few weeks and bring our little RV back up to Connecticut after swinging through Key West. By doing this we will be able to keep me mobile even though I don’t feel well. None of this will be easy on me, but staying home too much can turn into solitary confinement. Your thoughts start to haunt you, you begin a war of balance within yourself, your fear runs rampant, you become more and more irritable and you get sucked up into a black hole. Now even I know that that can’t be healthy? That’s not how to create a platform for yourself. But “resting” too much -- even if you need it -- can become hard emotionally, mentally and physically, and I completely can understand why some thrivers struggle to escape from the dark cloud.
I have returned to my local cancer center for fluids and help to get back to “tolerable” and I’ll probably be back for more next week. Cancer sucks, but it’s up to me to turn something sucky into something else even though it isn’t always a walk in the park. But I’m going to shine -- you can count on it. You might even think “How is she sick?”