Cancer Treatment Update: July 17 - August 14
Well, over the last month I have had two rounds of treatment (numbers ten and eleven) and I only have three more rounds to go! It feels strange to be coming down to the wire, closing in on the end of active treatment, and I have mixed feelings about the whole thing, to be honest.
Round Ten
On July twelfth I had my tenth round of Herceptin and met with my Oncologist to discuss the last four rounds of treatment. I told her that I am not interested in starting Tamoxifen until my blood counts are back to normal (which is still a few points higher) and that I was still pretty hesitant about doing Tamoxifen at all, but am willing to give it a try. I will have my last appointment with her on October 14, which will also be my very last round of Herceptin. She said we will meet once every three months, then every six, then farther and farther apart after my last round of Herceptin. I have to be honest, I am not sure if I am going to stick with DFCI for my treatment after I finish Herceptin. While I completely agree with the treatment plan that they followed for me, I am not thrilled about how I don’t get any real answers about long-term side effects, and it seems like the Oncologists and Physician Assistants are 1) overworked and 2) undereducated about all of the different kinds of patients they see.
Examples of some of the things that raise red flags to me in terms of my treatment which has lead me to the conclusion that I don’t want to continue my relationship with my current medical oncology team are things like never being told that Herceptin would be increasing to three times the amount back in January, my Oncologist not knowing how many rounds I have left of chemo at my most recent appointment (she said I have three and I have four), or the fact that I have seen no fewer than six different medical professionals over the course of treatment between my Oncologist and the various PAs that have sifted through DFCI in the last ten months.
I had one PA tell me that Herceptin causes anemia, and then another say it doesn’t, I’ve had my orders for Herceptin put in wrong by my Oncologist which lead to the nurse putting me on a ninety minute dose instead of a thirty minute dose, and those are just a few of the incidents that I’ve experienced in the last year that make me question the abilities of my medical team. On top of that, I don’t ever get answers to my questions about long-term side effects of chemotherapy or even recurrence rates and data to back my treatment plan. It’s frustrating. I want answers and no matter how I phrase the question or who I ask I don’t get them.
I’m also beginning to question whether I want to continue with Elliot Breast Health going forward too because a close friend of mine had a very terrible experience with them which ended up with her almost being undiagnosed with Inflammatory Breast Cancer until it was too late. I will advocate for what I believe I deserve for quality of care and if I don’t feel that I am being heard then I will leave. If I’ve learned anything throughout this whole nightmare it’s that you HAVE to be your own advocate and that medical professionals don’t necessarily know everything.
Round Eleven
I had my eleventh round of Herceptin on August 12 (two days ago) and feel a bit foggy but not terrible. I will say that over the last two months I have noticed a significant increase in how well I feel overall and that I am rarely tired like I used to be. I also believe that I’m getting close to being back to my old self in terms of mental clarity (with the exception of the first few days following treatment). In looking back at the old videos I took during weekly Taxol I am blown away at how much I accomplished despite being wicked sick. I suppose when you’re in the thick of it, you don’t really know just how bad it is. I also think that I was determined to persevere through the worst of the treatment despite being anemic and feeling terrible most of the time and that determination was what drove me to do some of the crazy things that I did.
Closing in on my one year diagnostiversary has been rough. Everyday is just another date on the calendar that reminds me of how hard it was last year getting diagnosed. It’s strange to think that something as simple as the date on a calendar can be such a massive trigger but it is. I remember exactly what I was doing last year on the fourteenth of August, and I remember even more what I was doing the weeks that followed. It feels strange to think that I have made it a year since my diagnosis and quite honestly I’m surprised at how fast the year has gone by. I remember thinking there was no way I was doing a year of chemo, that there was no way I could handle that, and yet here we are, I handled it somehow.
