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.
Elizabeth, you are an amazing writer and human being. I can’t wait to hear that you have published an autobiography and in the meantime you blogs are wonderful to read. I just wish that the cancer battle was not something that led to the blog! Your nurse Tina sounds like an amazing lady!
So impressed and happy for you. Definitely you are one of the strongest people I have EVER met! I will first in line to buy that book 🙂
Elizabeth, your blogs have given us a window into this foreign (to me) territory of chemotherapy. I’m very excited that you’ve decided to write a book and also start a sock line. You will be one busy girl! So happy that the chemo is over and you can now focus on moving ahead.
Keep writing, because we want to see that you are more than a survivor, that you are a thriver! Kudos to being in touch with who you really are, and blessings on a long and lovely continuing journey!
I love reading each of your blog posts- they are a small window into your experience. Thank you for being open and sharing! I will look forward to reading your autobiography! And I am excited for you with your sock business- it is a fabulous idea!!!
Hi Elizabeth? You write beautifully! You don’t know me….I was one of your cousin Finns Pre K teachers this year. I didn’t know about your story until just now when I read your Aunt Sarah’s post. A former Pre-K student of mine from NY, was also diagnosed with this same cancer. She also was diagnosed in high school. And like you….she is cancer free now! As a young person….she truly inspired me. The way she dealt with her diagnosis and treatments. When she wrote…..she was wise beyond her years…very much like you? you’re right…your story is just beginning ? I admire your will and strength and raising awareness. You are quite a remarkable young lady. I wish you all the best as you continue your story. And yes….I will be ordering some socks ? Many blessings to you and your family ?
Can’t wait for the full book, Elizabeth. Raw, honest, warts and all. And a privilege to get this window into your journey so far. Love, love, love. Looking forward to having you back near your DC/MD/VA fam!
Your strength in the face of adversity encourages me to rethink those things that I call troublesome… Thanks ET…
Elizabeth you are a very dynamic young woman. Your writing is so fresh and realistic. I see great things that will come to pass in your life. Keep giving of yourself like you are as you are passing a spirit and action of hope to so many!! Wishing you a wonderful year back in school!!
I am 62 years old and was diagnosed when I was 18, in 1974, the summer before I started college. Our stories are very similar.
My goal was to make it to college that first semester and I did.
I have had a fulfilling life for the past 44 years and feel very lucky and blessed.
I recently got involved in a survivor group at Memorial Sloan Kettering Hospital in NYC, back in my day nothing like that existed! You are right in saying that your experience stays with you all of your life, but it doesn’t have to define you!
Good luck at school and I look forward to your book!