Added: Cheron Delancey - Date: 07.01.2022 15:40 - Views: 19548 - Clicks: 1156
We held our inaugural webinar for women with hairy cell leukemia on May 21st. Women from several different countries and numerous U. We shared the names of Adi, Leshia and Sarah with permission. Hi everyone, my name is Adi. I'm on the board of the Hairy Cell Leukemia Foundation and I'm excited and honored to be on this call today. When I was first diagnosed with hairy cell leukemia about seven years ago, my doctor sat me down and said the scary word "leukemia. They had to give me ice chips and orange juice just to revive me.
Then my doctor said to me, "but the good news is you won the lottery. I know how to treat this. But now, seven years and two treatments later, I understand a little bit more about the disease and how we can live with it. Hairy cell leukemia is a very rare disease. We all know that. But it is extremely rare for women to have hairy cell leukemia. I never thought that I would meet another woman with hairy cell leukemia. After my second treatment two and a half or three years ago, I went to my first Hairy Cell Leukemia Foundation conference in Ohio. As I was leaving the conference, I met Sarah who is on the call today.
So, I really hope that we take this next hour to celebrate us, to celebrate how strong we are. Please note that you do have a voice within the Hairy Cell Leukemia Foundation. I am on the board, I scream and shout, and I'll always, always make sure that we will be heard and that more research will be done about women living with hairy cell leukemia. Can you tell us a little bit about how you've built your support system after being diagnosed with hairy cell leukemia and undergoing treatment?
I think it was described to me as if you're going to get one, it's this one. I'm not sure how I felt about that. I read literature, especially the literature from the Hairy Cell Leukemia Foundation. I'm not on the board, but I appreciated the content, the rich content that was available to me in the moment. I initially built my support by reading the journal articles and the patient stories. I'm kind of a private person when it comes to my personal health. I don't want to feel like I burden people when I share what's happening to me because everybody has stuff going on in their lives.
I don't want people to think that my stuff is more important that your stuff. But I live in a small town and things circled back. I learned through that experience of what sharing can bring. I ended up meeting the father of a friend. He was an oncologist at a hospital, and I ended up being able to connect and talk with him. He had hairy cell leukemia.
What I learned from that experience is sharing and opening up was an opportunity to connect with people and not feel so alone. But all the other patients were older men. I was so happy to meet her and have someone to connect with because I wanted to find somebody like me. That's really that next level of support that I wanted; someone I could talk to. I appreciated that opportunity and have stayed in touch with the Hairy Cell Leukemia Foundation. That's what's hopefully bringing folks to the table here is being able to find somebody that they can talk to and connect with in the future.
I'd love to talk with anybody who is looking for somebody else just to connect with around this experience, this journey. When I was diagnosed, my first response was one, denial and two, let me help somebody else. Somebody there said, "let me you up for a first connection. And so I talked to a woman who was just my age who had gone through it just before me so. That was very helpful. I had served as a First Connection volunteer for them and probably talked to 10 women.
I was diagnosed in and treated in I've gotten a lot of information from the Hairy Cell Leukemia Foundation so maybe they could do a similar sort of thing. I went to a regular cancer support group and I found that it wasn't a real good fit because many of those women were having mastectomies and were much more ill than I was. I did not feel comfortable sitting there being in remission when they were very, very ill. So, I was having difficulty finding a support system. I had a friend who was going through breast cancer at the exact same time that I had hairy cell leukemia. We graduated high school together and we both had young children.
I felt guilty because she was going through the surgery and all of the chemo. There were so many things going on with her, so I felt like she was sicker than me. However, after talking to her she said, "you know what, I have breast cancer. They can remove that and I can get chemo and I'll be okay. You, you have blood cancer. That is all over your body," and she's like, "that to me is scarier than what I have.
Everybody has their own story and their own way of looking at things. When I was first diagnosed, which was in after 12 years of low white blood cells counts, I ed something called Network 54 which was an online chatroom and there was a ton of discussion from people with HCL - men and women, young and old. So, I got a lot of good information from them as far as what to expect, how to decipher the blood work reports, who they went to, who they saw, who they recommended and that was really helpful.
They have since transferred to something called Tapatalk. I don't think there's as many people on there. There are some really good people to help you that have gone through a lot worse than what many of us have and it really helped me as far as a support group. I told very close friends and family but, a lot of people still don't know and I prefer to keep it private.
I was diagnosed in and I didn't want to tell people at work. My support group was my husband and my family. My sister is a nurse and she's very supportive. I wanted to apply for a promotion at work and I knew if I didn't apply then, it would never come again. I applied and did get promoted. I was diagnosed in and not treated until the end of So, I kind of slogged through, but I made it.
One of my best friends was crying when I told her and I said, "No, no it's not that way. I feel I'm vindicated. I was right and the doctors were wrong and now I've got the right diagnosis and I'm going to get better. I was diagnosed in , but not treated until a year later, roughly. My support came from my team at Ohio State University. In terms of support, I had complete confidence in them.
I also had taught for 35 years, 20 of them at this one particular school. We had a good network and tight community.Looking for a hairy meditater
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