I was sitting on the bow of my friends boat this afternoon, headed for a popular local attraction in southern Florida. I mention this because it was a beautiful day, a beautiful ride, and it gave me a lot of time about what I was going to write today. In the wake of recent on-line challenges, the “ALS Ice Bucket Challenge”, “Happy Challenge”, and others (I have actually done the first two), I realized how much good had been done for ALS awareness, and also how happy a person I really am and can be. While ALS is considered rare, putting a name to the disease, Lou Gehrig’s Disease, made the disease recognizable, and for many, personal.
I decided a week ago, that I would issue my own challenge, but to myself. I am very grateful to the many readers and followers of “Paul’s Heart” and on the same Facebook page. I have spoken a lot about my issues as a patient, a survivor, and as a caregiver of not just cancer, but a rare blood cancer called Hodgkin’s Lymphoma. September is “Blood Cancer Awareness Month” but also recognized as “Lymphoma Month” for those that break it down.
The trick is, how do I make you care and develop awareness of a rare disease? Sure I could issue an internet challenge. I am sure everyone is trying to brainstorm the next big fundraiser. But I think the big success of that challenge, is what I plan to do, put a face or make my challenge personal. I am not going to ask you to anything but read, learn, become aware that just because a disease is not the most talked about, such as AIDS, breast or lung cancer, cardiac disease, does not mean that it does not deserve or need attention. What you do with what you learn is up to you. I am not challenging you to donate money, just become aware. I am not asking you to do any stunt, just simply share what you read.
I am not a doctor, so you will not get medical advice from me. What will you get? Life experiences, of my own, and from the hundreds of people that I have come across over the last 24 years. Twenty-four years!! I have seen so much progress in the fight against cancer, and my cancer, Hodgkin’s Lymphoma, but it has not been enough. Cancer has ravaged my family. My grandmother died from two cancers, breast and ovarian. My sister passed away a few years ago after battling “aplastic anemia” for the second time in her life (she had been in remission since the late 1970’s with her first battle). This past May, I lost my father from lung cancer. This is nothing compared to the dozens of friends that have passed from either the cancer itself or the many side effects that have developed either soon after treatment ended, or late in life like I have had to deal with.
For the next 30 days, I will post 30 posts pertaining to a cancer that I know all too well, in recognition of Lymphoma Month, Hodgkin’s Lymphoma. I will post about my own story, other patients and survivors, caregivers, and topics such as emotions, family, fertility, employment, treatment options and many more. I will also post other stories not cancer related because “Paul’s Heart” is more than just a cancer blog. It is about my life as a survivor and as a single dad. Of course, if you wish, you may comment directly on the blog, or write me at firstname.lastname@example.org, or visit my Facebook page for “Paul’s Heart.”
I am a 24 year survivor of Hodgkin’s Lymphoma, stage 3. I was treated with some of the most toxic drugs. For years I have struggled with why I have survived all these years, while so many do not. As time has gone on, new treatments have come, but enough has not been done to cure Hodgkin’s. Follow “Paul’s Heart” through September, and you will see why more needs to be done.