When I started my breast cancer journey, I promised to be open and transparent about all of my experiences. The last few months I have been uncharacteristically quiet. The reason is that this is a truly difficult experience.
But let me set the context first, I literally could not have had better outcomes. After my double mastectomy, test results indicated that they got all the cancers with clean margins and no lymph node involvement. My oncotype score, which indicates the likelihood of cancer recurrence, is very low. I didn’t need chemo or radiation and I only have to take aromatase inhibitors for five years. If I don’t take them, there’s a 5% chance that the cancer may come back in the next nine years. If I take them for the full five years, there’s a 3% chance. I could not ask for better odds.
That said, this is a slog. I am very aware that other people’s experiences and outcomes are harder and more difficult than my own. I feel for them, and I wish them success in their journeys.
I’ve come to realize that no matter whether you are on the worst end of the spectrum or the best end of the spectrum, this journey should not be about comparison and it’s difficult regardless. The fight for life from cancer is always a big deal. It’s clearly a big deal at the worst of times. In my case, it’s also a big deal at the best of times. After my first surgery, I had a lot of pain and recovery was difficult and complicated. I was in the hospital for three days for what was supposed to be an overnight visit because they could not get my pain under control. This was largely a matter of nursing staff not being concerned about being timely in the administration of pain meds. Unfortunately, when you break the cycle of pain medication, you have to start over. My worst pain was searing pain across my back from my right side around to the center of my chest on the left. I wrote about this pain in an earlier post. I defined this pain as a red fire dragon. It stayed with me for months. In addition to that, my whole body ached. Everything hurt.
Over the next 6 weeks, I slept a lot both to manage pain and to deal with the reality of what I had gone through, what felt like a betrayal by parts of my body I had valued. I also wrote about this in an earlier post about saying goodbye to my breasts.
I couldn’t lift my arms for weeks. I also wasn’t allowed to shower for a month. That meant that my husband had to wash me, dress me, brush my hair, brush my teeth, anything that needed to be done with my body, I needed his assistance. The only way I could leave the hotel was in a wheelchair and the only walking I was permitted to do was from my bed to the door of the room and to the bathroom. And I wasn’t allowed to do laps. 😊 My doctor figured me out pretty quickly. He knew that I would push to recover as quickly as I could. As it turned out, there was no quickly. I couldn’t push. I had to give my body the time it needed to recover and heal.
I’m lucky. My husband is so loving, compassionate, and caring, he could not have made me make feel more comfortable and loved throughout this adventure.
Following my reconstruction surgery, the pain has been less, but the side effects from the aromatase inhibitors, the meds I have to take for five years, are intense.
I’m tired all the time. I have a pretty constant headache. My body is fatigued. I’m nauseous a lot. I have joint and muscle pain. And while I am in less pain, it’s somewhat more frustrating because I feel that I should be able to do more. My biggest lesson on this journey has been patience. I need to give myself grace as I go through this process.
No. I’m not my usual self. I’m more focused inward than usual, but that’s necessary. I reach out when I can, but that’s much less than usual and that’s one of the most difficult things for me to accept. I know that I will be myself again. It hasn’t even been six weeks since my second surgery and I’m still healing and on modified house arrest. I am allowed to go out and walk a bit, but I’m still wrapped and wearing binders, until next Tuesday.
I’m an optimist. Yesterday my husband took me to my favorite Rose Park. I walked a bit, but mostly, I just sat and breathed in the sunshine and the beautiful Vegas, autumn weather with my favorite seasonal Starbucks beverage. As usual, I came home and took a nap. I will get through this.
To anyone else who is on this journey, the most important thing I have learned is that there is no roadmap for cancer recovery. I have looked for one almost nonstop. I find myself wondering if what I’m going through is “normal”. There is no normal. Listen to your body. Stay patient. Give yourself grace. Notice the beauty around you. Breathe.
Deborah's Deliberations 