Yesterday was a pretty good day. I received my 4th out of 8 chemo infusions, and it was the last round of AC before I switch to Taxol, which comes with less nausea related side effects. I also won't have to continue taking steroids on Taxol, which may be causing some digestive side effects as well. The chemo drug Adriamycin is commonly referred to by nurses and chemo patients as "the red devil" because of it's toxicity and severe side effects, so I'm glad to put it behind me. The nurse yesterday also told me a story about a patient from Mexico who, upon hearing we call it "the red devil," was appalled. In Mexico, they refer to Adriamycin as "Jesus' blood" because it's healing you. What a much more positive perspective! And it must be true, because my oncologist believes the treatment is working.
I saw Dr. Mintzer for the first time since beginning chemo (he's been out of town the past few weeks). After catching up on my experience and side effects, he gave an A+ as a chemo patient and encouraged me to continue using over-the-counter meds to anticipate the side effects I've been experiencing the past few rounds. He also did a physical exam and said the mass feels "substantially smaller"!!! Hormone receptor cancer tends not to respond as quickly to chemo compared to more aggressive tumors, so the fact that after 3 infusions he feels a difference is very encouraging. He also was unable to feel the swollen cancerous lymph node under my arm, which was previously easy to find. Obviously, I'm really encouraged by this, and it's just the news I need to keep going for the next 2 months.
Positive thoughts and prayers for energy this week would be appreciated. On top of my typical teaching schedule at the university, I am currently serving on a hiring committee and have a number of extra meetings coming up. I'm sure I could have stepped away from this commitment because of my treatment, but to have been invited to serve in this way as a first-year, full-time Lecturer... I was not about to pass up the opportunity. Cancer may be slowing me down some, but I refuse to let it interfere with every positive aspect of my life. So I'm pushing through. Thus far, I have found after receiving chemo on a Friday, I typically hit a low energy point around Wednesday, so I'm hoping I can take some extra naps to get me through the week. And since I'm still avoiding coffee (doesn't sit well in my system with the chemo)--lots of caffeinated tea!
Chemo is everything and nothing I expected, all at once. After making it through the first round, I was determined to take control over my side effects and do everything within my ability to improve my day-to-day life with cancer. I spoke with the nutritionist at the infusion center and she gave me advice on what foods to avoid (like cruciferous vegetables, dairy, or anything known to cause heartburn or gas). She also suggested starting my day by drinking hot water with lemon, to soothe my digestive system and get it working before I eat anything. So I've ditched coffee and replaced it with hot water and lemons, drink loads of water and tea throughout the day to stay hydrated, and being more conscious of what I'm eating has nearly eliminated my uncomfortable digestive side effects.
No nausea, just a little tired at times. I've already identified the pattern. I go for chemo on Friday mornings and take the rest of the day to relax. The weekend is ok, nothing too stressful but I'm able to keep grading and prepping for the week. Tuesday/Wednesday/Thursday are my tired days, and Wednesday in particular is rough. Apparently, that is the timeframe when my white blood cell count hits a low before starting to rebound. This would typically take longer, but they have me on Neulasta, which is an injection the day after chemo meant to boost my immune system. It's a pretty odd medication. At the end of my chemo infusion, the nurse attaches the Neulasta on-body injector, a small box about the size of a tealight candle. Once she attaches it, there's a series of beeps and then a snap, like a rubberband hitting my skin. It's actually the injector inserting a tiny needle, then a tiny IV. The little box continues to blink with a green light. It's so bright that if I wake up in the middle of the night, it throws me for a few seconds seeing that bright blinking light reflecting off the ceiling. 24 hours after the nurse attaches and activates the injector, it beeps again, uses the tiny IV to inject the medication, retracts, and the light turns red. I pull it off and throw it away. Easy peasy.
So thankfully, the Neulasta helps my immune system recover more quickly so that I can receive chemo every two weeks, where some people have to spread it out every three weeks. This is a more aggressive approach, which my oncologist recommended due to my age. But on Wednesdays, when my white blood cells hit their low, I feel it. Not physical symptoms so much as emotional ones. Hopelessness. Frustration. Despair. I feel sad and angry and exhausted and like I-can't-do-this-anymore and why-is-this-happening-to-me or what-have-I done-to-deserve-this. The first and second time this happened, I didn't quite understand it. Now that I'm on infusion #3, at least I know what to expect, and so mind-over-matter I will remind myself it's just the chemo talking. I can do it.
Especially since infusion #3 was the smoothest yet. The IV went in easy (took multiple tries with infusion #2), I had no site reactions to the drugs (after some redness on my skin last time - thank you, Benedryl!) so I didn't need as much saline and was done an hour earlier than usual. I only have one more infusion of AC (adriamycin and cytoxan) which is the harsher chemo cocktail. Infusions 5-8 should come with less severe, though different, side effects. If nothing else, it will be easier on my veins, which I'm looking forward to! I'm grateful to have not needed a port for my chemo infusions, but I wasn't quite prepared for how difficult the IVs would be throughout this treatment.
Even though I'm a little tired and a little emotionally drained, overall things are going well. The hair on my head is completely gone, peach fuzz included, and I'm getting used to wearing my wig for teaching and hats the rest of the time. A student who took my class last semester commented on my dark hair color and didn't even realize it was a wig! It's thick and heavy, but it always falls perfectly into place and takes no time at all to style, so I guess there are some perks to chemo after all. Trying to keep a positive attitude. Succeeding every day but Wednesdays.
In early December, I met my medical oncologist, Dr. Mintzer, for the first time. Prior to my own experience, I had no idea a cancer patient would have multiple oncologists for various aspects of treatment. Dr. Mintzer prescribed my chemo and will help me manage my survivorship, including hormone therapy since my particular cancer is hormone sensitive.
The appointment began with bloodwork, drawn by one of the nurses, Taylor. Again, I see a nurses' job goes beyond medicine. I immediately felt like I was with an old friend. Taylor has short hair, lots of tattoos, and struck up conversation about movies, music, her wife, my dogs, all in just a few minutes in the blood draw room. After she took my vitals and led me to the exam room where I would meet the doctor, she got serious for just a minute. I wish I remembered exactly what she said, but whatever the words, they gave me permission to cry. She assured me that in a year, I'd look back on the experience and it would feel like a distant memory. She handed me a box of tissues as she saw my eyes fill and said, "it's alright." It's alright to cry. It's alright to be scared. It's alright--you're here, and we've got you.
Dr. Mintzer was warm but direct. My husband felt comfortable knowing that he's older and more experienced than my surgeon, and knowing that they work as a team on my case. He recommended I begin Dose Dense Chemotherapy ACT - 4 rounds of the chemo drug mixture referred to as AC (Doxorubicin and Cyclophosphamide) and 4 rounds of the drug referred to as T (Paclitaxel). My infusions will be 2 weeks apart for a total of 16 weeks of chemo. This will hopefully shrink the tumor and turn the positive lymph node to negative, allowing the surgeon to remove less lymph nodes. Chemo will be followed by surgery, radiation, and ongoing hormone therapy.
To be quite honest, I wanted to avoid it all. I had a performance approaching with my dance company, final exams to grade, and always go home to Chicago to celebrate the holidays with family. He wanted me to get started as soon as possible, but agreed waiting until after Christmas would be acceptable.
Spending time with family and friends over Christmas was bittersweet. On the one hand, I was grateful for the chance to see the people I love most in the world, and for them to be able to see me. To see that I'm still me, that I'm ok, that I will be ok. But for days I felt a little sick to my stomach with dread over the approaching chemo.
Would it hurt? Would I throw up? Would it work?
December 28th, my first chemo infusion. Before the infusion, I saw Taylor for a blood draw and then Dr. Mintzer. Each time, this would be the process so they can check my red and white blood cell counts and make sure my body has recovered enough for the next infusion. Chris was able to accompany me for this first appointment, so together we went upstairs to the infusion center. They took my vitals again and showed us around--mostly to the kitchen where we could find snacks and drinks, and the bathrooms I could use versus the ones he could use. (Because the chemotherapy gets into a person's waste, they recommend avoiding using the same bathroom for a few days.) I settled into a comfortable recliner chair with a flip up desk top and a small TV attached. Chris sat nearby. I'd packed a bag full of stuff--a neck pillow, cozy blanket, snacks, hard candies, coloring books, magazines. If I was going to go sit through hours of chemo, I was determined to be prepared.
Turns out, most of my anxiety over the actual infusion was unnecessary. Aside from a little stinging in my arm as the nurse pushed the Doxorubicin drug in, it wasn't bad at all. Doxorubicin, also called Adriamycin, is known in the cancer community as "the red devil." It really is bright red, like Kool Aid. The nurse, Melissa, put in my IV and started me on a half hour of pre-meds, mostly anti-nausea related. Then she brought in the two syringes of bright red liquid. Because the drug is so strong, it can't be administered via drip. Melissa connected the syringe to my IV and slowly pushed it in, monitoring me for any reactions. I also chewed on ice chips for the few minutes it took her to administer the drug. The infusion creates a strange metallic taste in your mouth, but also, the ice protects the cells in your mouth from the chemo and can help to prevent mouth sores.
It did burn in my arm, just a little, at first. Being my first time, I had no idea if this was normal, and so I gritted my teeth and said everything was fine. After a few minutes, she connected the second syringe, and when she began the push, I felt a sharp sting in my hand, through my wrist, and up my arm. It only lasted a second, but it made me jump. It seems after the first syringe, a small blood clot must have formed near the IV entry point, and the second push moved it up my arm. I didn't realize that burning sensation at the beginning was a reaction in my veins to the drug. The red devil is so powerful that a person can only have a limited amount in their lifetime. In other words, if I ever need chemotherapy again in the future, this particular drug will be off the table.
Did I mention that when I went to the bathroom after this infusion, my urine was also bright red? So weird.
After my bathroom break, they gave me about 15 minutes of saline drip to flush out my veins before the next drug. Cyclophosphamide, or Cytoxan, was easier - just a drip into my IV. No need for ice chips. Chris sat with me the whole time while I watched Rachael Ray and The Price is Right. I sipped on ginger ale and ate a granola bar. After a few hours total, we headed home and Chris picked up soup from Panera for us both.
The soup was the real mistake of the day. I was pretty hungry, having been up for 4-5 hours and eating just peanut butter toast and a smoothie before chemo. I got a bowl of Autumn Squash soup, ate it, and we both crashed on the couch. A few hours later, I woke up from my nap feeling nauseous. I sat on the bathroom floor for a half hour, and though I never threw up, I don't think I'll be eating Autumn Squash soup again for a long, long time. Sticking to bland foods on chemo days from now on.
Side effects can occur over the next few days, but I have anti-nausea meds and plenty of free time to rest.
1 down, 7 to go!
Breast cancer survivor.