My final chemo was June 14th and by July 13th I will have had my final oncology appointment, PET scan and my port will have been removed. This is my final blog post while undergoing chemotherapy but it is not the end of my story or my blog. From my findings on cancer patients and survivor narratives, there is an obvious shortage of dialogue on life after cancer treatment. It is a sad fact that there are more people diagnosed with cancer then there are survivors. But I blame the radical shortage on the perceived, immediate recovery of patients. Let it be understood that healing is gradual both physically and mentally. And I believe it to be important to continue sharing my story to whomever is willing to read it.
Once the cancer patient is marked in remission or as a survivor there is significantly less resources and attention to their needs. It seems once that patient has been cured they are just left to return to society. If the goal of the medical field is to cure patients and have them survive, should it not also be a goal to provide them a bridge to transition back into society? As of right now, I do not feel close to the end of my journey and I do not believe a month from now I will feel much closer. Cancer may have suddenly waltzed into my life but I anticipate it will take a lifetime to exit. But do not worry, insurance companies have us marked as at risk patients for the rest of our lives because those who bear the risk and financial costs are the ones who do not forget.
I am proud to announce that I’m officially writing an autobiography. I have no definitive timeline as school will assume my first priority in the fall, but I will continue to use this blog as a writing outlet until hopefully I publish! I am extremely grateful for the audience my blog has created and the encouragement I have received to tell my story and capture my truth.
Continuing with updates, I have decided to start a sock shop linked to my blog where I will begin selling socks featuring different colored cancer ribbons. Long story short I want there to be more cancer ribbons represented in clothing products and how appropriate for me to focus on socks. I am starting with two different personal designs: b(+) and bloodsocks. The strictly violet cancer ribbon socks are limited edition for my audience of supporters and are named b(+) because that is my blood type, the same blood infected with the disease. The bloodsocks will be an ongoing product with the focus on uniting similar cancers. There are already societies and groups lumping cancers together, but I want to focus on uniting them. That is why bloodsocks features four of the most common blood cancer ribbons. My hope is to continue designing socks uniting cancers such as female cancers, male cancers, sarcomas, etc. I hope you check them out!
Now for some story time: originally my last chemo was scheduled for June 28th but my last infusion of brentuximab was canceled- by me. The main reason for this was the toxicity was starting to cause issues that I was concerned could become permanent and a loss of trust in my oncologist because I had not directly heard from him or had an appointment for over three months. My doctor’s expertise, personality, research, etc. is undeniably excellent but when you are going through a life altering treatment you want a doctor who is accessible and can treat you as a patient with a holistic view of you and your journey through treatment. I needed a doctor who could talk me through managing side effects, offer up advice and check in with me. Towards the end of my treatment I confirmed with my PCP, other oncologists, and nurses that my oncologist’s lack of availability was unacceptable. So, after consulting other medical professionals, with knowledge of blood cancers, and having them see no reason for me to receive that last infusion, I made the decision to refuse it.
Before my last chemo began, I ran into Tina at the coffee stand and learned she would be performing my last infusion. I joked with her all crazy-eyed that I wanted balloons, confetti and streamers to celebrate and I walked into my room filled with balloons, confetti and streamers and felt unconditional love. In thirty minutes my nurse worked hard to make me feel special and loved- it became obvious nursing was more than a job to her. I am excited to announce that Tina and I will be pen pals- it is Facebook official. I survived treatment because of the infusion nurses. Those women are the most selfless, loving, strong, inspiring individuals I have ever met. They are the bestest people in the world.
It could be considered cliché to say that there is always more to the story than you see, but it is a fact in the times of social media. To those who see it as a bell being rung at the end of a treatment, a bump in the road, this is the end of the story. But for those who have been and are listening, this is just the beginning to my story.