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!
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!
After avoiding reality for several days, I finally made some phone calls. I pulled out a brand new journal to use for cancer notes (when you're a writer, lots of people gift you journals. Also, something about being organized helps me feel like I'm in control). I wrote down my basic diagnosis information, and then scheduled appointments with surgeons at three hospitals. In hindsight, this was probably excessive, but since I live in New Jersey, I wanted to consider a hospital closer to home than Penn, where my diagnostic testing was done. And the top hospital in NJ I was interested in wasn't able to give me an appointment for about three weeks, and not at my preferred location. So I tried a third.
My first appointment was at Penn Medicine with Dr. Alina Mateo. I should have just stopped after that. Everything about the appointment was as good as one could hope for. Surgical Oncology at the Pennsylvania Hospital location is on the top floor of a glass high-rise, and the view from the waiting room was the best I've seen in Philadelphia. The decor was warm, modern, and simple. If it's possible to feel comfortable while waiting to meet with a cancer surgeon, this is the place.
Dr. Mateo met us in the exam room, my husband and I. She was young, probably close to my age, and kind. We talked for a few minutes and she gave me a quick physical exam before inviting me to get dressed and meet her in her office. I can't express how much I appreciated that. Sitting in an office with my husband, across a desk from a surgeon, having a conversation like a person rather than in a gown in a sterile exam room like a patient.
As she explained my diagnosis and her recommended treatment, she drew on a diagram and wrote out some simple notes for us. She walked us through lumpectomy vs. mastectomy, axillary lymph node dissection vs. sentinel lymph node dissection, and neoadjuvant chemo vs. adjuvant chemo. She recommended an oncologist to discuss chemo, listed the additional tests she would order if we decided to move forward with treatment at Penn, and answered our questions.
The most important thing she did for me was make me feel like I had a choice. She was clear about her recommendations, but deciding between breast conservation surgery (lumpectomy, which she suggested) and a mastectomy was up to me. Having chemo first (her recommendation) or later or at all was up to me. Sticking with Penn or going elsewhere was up to me. She explained why she recommended the course of treatment she did, but presented the options. Cancer is such a big, scary, out of control, unexpected thing. Any element of choice, I was grateful for.
My husband accompanied me to meet a second surgeon, at a hospital in New Jersey. We thought it would be closer to home, but it actually took about the same amount of time to get there. Walking in, the building felt like a hospital, you know? I kind of hate hospitals. That warm, comfortable, welcoming feeling with the great view of the city was nowhere to be found.
But you can't pick a surgeon based on the building alone, so I tried my best to keep an open mind. We had researched this surgeon online and were impressed by her experience and expertise. She seemed to be one of the top breast cancer surgeons in the area. It was clear my husband was leaning in this direction--in state, slightly older, more experienced surgeon. She met us in the exam room, my husband in a chair and me on the exam table in a hospital gown. I wish I could explain why I felt so tongue tied by her presence, but I can't. It was like a lump in my throat prevented me from asking questions, from expressing myself freely.
Her recommended treatment plan was roughly the same as the one Dr. Mateo outlined, though had that appointment been first, I would have been confused and overwhelmed without the diagrams and simple explanations. The biggest difference, the deal-breaker for me, was that while this surgeon mentioned the options of lumpectomy vs. mastectomy, it was clear breast conservation was not her priority. She said that many women choose mastectomy so they don't have to worry about recurrence. She mentioned DIEP flap reconstruction, where the plastic surgeon grafts fat from another part of your body and uses it to reconstruct the breast. And I will never forget the way she said this:
DIEP flap construction is very popular, so you get a nice little tummy tuck as a bonus.
A bonus? More invasive surgery that involves removing my breast, slicing into my abdominal muscles, with multiple surgical drains and extended recovery time, and you want to sell it to me as a tummy tuck?
When we got to the parking lot, my husband expressed he thought she was great and I broke down crying. No way I was ever going back in that building or to that doctor again. No way.
I ended up cancelling my third appointment and staying with Penn Medicine. I felt comfortable with Dr. Mateo, I had been treated with care throughout my diagnosis, and the additional testing they recommended was extensive, which made me feel like they were doing their due diligence to ensure they didn't miss anything. I'm sure either of the other surgeons I researched would have done a fine job. But when you're spending as much time with a doctor as cancer treatment requires, with years of follow-up appointments, there are factors other than their resume worth considering, and the care I received from everyone at Penn, not just medical care, but care, was unmatched.
Breast cancer survivor.