Our Health Policy Matters

My daughter Larissa died of Metastatic Breast Cancer five years ago, in May of 2018.  She had only two wishes at the end. One was that we plant a tree for her. We did - in a Middletown CT city park - and it has grown straight and tall. The other was that she not be forgotten. Larissa's family and friends took pains to reassure that she could not be forgotten. If you were fortunate enough to know Larissa, you would know why. Still, I wondered how I might celebrate her a little more now that some years have passed, while sharing some of her memorable spirit with others (some who knew her and others who did not), while reminding us why she was such an extraordinary woman. In early 2017, Larissa started a blog called Metastatically Speaking, through which she chronicled her life with MBC. Unfortunately - and through no one's fault - her blog disappeared some time after her death. So, if you search for it now, you can't find it.  However, I was fortunate enough to see and retain

Ironic. I was not as nervous as you would think on April 23 rd .  Martin, my mother and I drove up to Dana Farber.  All weekend I wanted plan for Poland, Barbados and Florida, as we brainstormed ideas of what could be attainable or possible. I started to realize I looked pregnant… but that couldn’t be. When the appointment began I noticed it felt like a routine visit. Everything went smoothly, but what were we focusing on? It was this: if I did nothing the outlook for me was living three weeks to a few months longer. So, is that my only option, I wanted to know?   No, I was told we can try a low dose chemo and see how it works.   Since it is low dose, they said, it won’t do much harm, but we truly don’t know how it will work. It’s not a treatment we have used a lot at low dose and technically you are in liver failure, leaving you with limited options.   Of course, the goal would still be to get you to be stable; however, this is a blind treatment. We don’t know if this approach w

Wow, this past week has been emotional and unreal.  For the past several months I have noticed that thrivers would become quiet on social media, then someone would post news on their passing.  I always wondered how so soon?  But on Wednesday, April 17th 2018, I went for scans and an already scheduled doctor’s appointment.  What I wasn’t expecting to hear is this: “We should start planning end of life discussions.”  The nurse practitioner looked at me and realized how shocked I was for those words to pass her mouth.  End of life? Well, yes, I haven’t been having the easiest time lately.  It has been an extremely bumpy road between my recent hospital visit and other moments where I was seeing brighter days.  The APRN looked at me and said “you still look as though you have more fight in you.”  I said of course, but how do you process this?  She said that on Monday, when your doctor returns, we will discuss all the options. She said there are treatment options but they won’t be easy; th

How are you? The question I’m asked over and over again, each and every day. I don’t mind answering how I’m feeling, its a completely normal thing to ask, but let me explain what okay actually means. How are you? Me “Better” Better can mean so many different things. This past week I went from a 10 to a 8. Yeah I feel better but far from the better we all associate with the word better. We spend so much time sometimes trying to explain how we are feeling when to be honest its no easy task. Am I ever okay? No. I have cancer. But I am okay because when I’m feeling up to it I choose to be OKAY. Man is this hard to explain. This is where positivity and determination tend to get mushed into one meaning. Am I the super positive wonder woman? Or am I a 6 on the scale and I just want to make the most of it because someday I’ll be a 10 again. I was dreading Tuesday because I thought that I might be developing a reaction to my chemo, but Monday came and so did the pain. We don’

  ‘I Can Do It:’ When I was in college I had to take an anger management course. It was mandatory for everyone with my major. It turned out to be a life-changer for me and it helped me become who I am today. I’m not saying run to your nearest Barnes & Noble or Amazon.com for the self-help section, or anything like that. The first day of class my professor went over the syllabus with us and told us we would need to read one self-help book. Here’s the thing: I HATE READING. I do it if I have to but I don’t read for fun. I’m a slow reader and it sometimes it isn’t easy for me to process information that way. Later that night I went to the self-help area of a bookstore and looked at several books. “Too long … the words are too big … I don’t understand this …” and on and on, until I came across Lewis Hays’ book “ I Can Do It. ” It was short, the words weren’t too big and -- drum roll please -- it came with a DVD! I thought I had hit the jackpot, and it would turn out that I did, in

Anxiety.  Mental health. Depression. Am I exempt from stress, anxiety or any other type of mental health issues?   No -- I wish, but no.   I grew up surrounded by people struggling with their mental health. My brother Tim was diagnosed with schizophrenia at a young age. Honestly, I didn’t understand the illness, and so was often annoyed that my older brother was doing older brother things like stealing my diary or crashing my date nights. My list of examples of Tim being Tim could go on and on. I have also have had friends who came back from war with PTSD (and some could say I have PTSD too).  It doesn’t matter how positive you try to be, or how much faith you have. Dealing with a terminal illness can present several mental health issues and it’s nothing to be ashamed of. People ask me all the time how I stay positive. The answer -- is I don’t know. Yes, I keep my head up, I keep moving forward, but it doesn’t mean I don’t have moments where I feel like I’m drowning in a sea I ca