Ask Coco
Hi Coco!! I recently submitted a form via the “Contact Us” section regarding the opportunity to work with your organization, but I also wanted to ask a few more personal questions.
I was diagnosed with Polycythemia Vera and a JAK2+ mutation late last year, and have been receiving treatment since. I went through phlebotomies and oral chemotherapy for the first half of this year (PV is a chronic blood cancer so the treatment process is different but there is a lot of research going towards curing it so hopefully there will be a long term treatment option soon!) and am now on interferon shots to try to reduce my allele burden and prevent further progession. I also got a stent placed in my liver since the PV caused blood clots in my hepatic vein and was leading to cirrhosis of my liver, which has been a major bummer since I can no longer eat the same foods I previously did or drink my margaritas (I loved tequila lmaooo)!! I don’t like to stew on that tho and think back to how grateful I am to be alive and have my medical team, family, friends, and just everyone who has supported me. I know that as long as I stay strong and grateful, everything will be okay, and I know that I am going through this for a reason. I honestly think that is why I feel this intense calling to connect with others who are also going through these experiences and help build better support systems.
Anyways, I apologize for the long introduction! I do have a question that has been weighing on my mind lately. I am at a point in my treatment that I am no longer regularly seeing my doctors, getting lab work done, getting procedures, and am just trying to heal from it all. But how do I move forward from my diagnosis and treatments? I feel like since recieving my diagnosis, I have been afraid to go back to the version of myself that I was before, maybe out of fear that I will become sick again or something. I just am struggling with moving forward with my life beyond my conditions and want to move into my future. Do you have any suggestions for this? Or felt the same way during your journey? Thank you in advance and I hope we can connect❤️
