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...

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...

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...

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...

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...

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’...

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...

  ‘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...

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 dro...

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 dro...

  Today I walked into Dana Farber for the second time.   The first time was a consultation and they were absolutely wonderful.   Today I was lucky to be able to get a follow-up appointment (very quickly) to discuss clinical trials and treatment plans.  It’s no secret that my liver isn’t too happy right now but we hoped that a certain clinical trial would be a good fit for me.  But unfortunately my liver tests are too high right now and we need to act fast to start my next treatment.  If you’re wondering if I'm sad about not getting into a trial right now, I’m not!  I will always be eager to jump into a trial at some point but the medication I will be on Eribulin (Halaven) which is a type of chemo would of been in my trial anyways.  My biggest decision today was whether to continue treatment (Eribulin) here in Connecticut or to make the jump and join Dana Farber full time.  Eventually, I would need to leave for a bigger hospital.  Even ...

  Today I walked into Dana Farber for the second time.   The first time was a consultation and they were absolutely wonderful.   Today I was lucky to be able to get a follow-up appointment (very quickly) to discuss clinical trials and treatment plans.  It’s no secret that my liver isn’t too happy right now but we hoped that a certain clinical trial would be a good fit for me.  But unfortunately my liver tests are too high right now and we need to act fast to start my next treatment.  If you’re wondering if I'm sad about not getting into a trial right now, I’m not!  I will always be eager to jump into a trial at some point but the medication I will be on Eribulin (Halaven) which is a type of chemo would of been in my trial anyways.  My biggest decision today was whether to continue treatment (Eribulin) here in Connecticut or to make the jump and join Dana Farber full time.  Eventually, I would need to leave for a bigger hospital.  Even ...

The most overlooked people in my Metastatic Breast Cancer journey are my oncology nurses and my oncologist.  These brave women have a hard job. They watch people at their weakest points, they say their goodbyes when it’s time, and they cheer when the battle is complete.  It’s especially difficult for them to watch the young ones go through a battle that is not going to end until the universe takes us away. They smile when you need a smile.  They pretend they aren't swamped with patients as the line for a chemo chair grows around the corner. These woman are the unseen warriors who keep us going.  My Starling angels! (Aka Starling Darlings) Over the past year I've been fortunate to have had such a remarkable oncology nurse.  It was her idea to do the Mariah Carey video!  Rachel always made herself available to me and she always cared.  Chemo is scary, accessing your port for the first time is scary, the endless needles in the beginning are not someth...

The most overlooked people in my Metastatic Breast Cancer journey are my oncology nurses and my oncologist.  These brave women have a hard job. They watch people at their weakest points, they say their goodbyes when it’s time, and they cheer when the battle is complete.  It’s especially difficult for them to watch the young ones go through a battle that is not going to end until the universe takes us away. They smile when you need a smile.  They pretend they aren't swamped with patients as the line for a chemo chair grows around the corner. These woman are the unseen warriors who keep us going.  My Starling angels! (Aka Starling Darlings) Over the past year I've been fortunate to have had such a remarkable oncology nurse.  It was her idea to do the Mariah Carey video!  Rachel always made herself available to me and she always cared.  Chemo is scary, accessing your port for the first time is scary, the endless needles in the beginning are not someth...

I’ve had my ups and downs in life just like everyone else.  Everyone asks how I stay so positive during blow after blow of bad news. Some people have asked me if I have “mourned” yet. And up until recently I have not entirely understood what I needed to mourn.  I have also read blog after blog about how people say the craziest things to people with cancer.   And again I didn’t understand that until recently, either.  Working in the disability field I'm used to subtly correcting people because people truly don’t know what to say in an uncomfortable situation.  But recently, I have heard the most hurtful things that even I couldn't push aside.  Of course I tried, but after a month I finally broke down. I'm strong, I'm a Capricorn. We are strong, confident people for the most part. But I'm not indestructible, and I can feel.  I mean, I feel all the time!  I feel fear, sadness, loss, disappointment, and so much more. I’m just great at hiding th...

I’ve had my ups and downs in life just like everyone else.  Everyone asks how I stay so positive during blow after blow of bad news. Some people have asked me if I have “mourned” yet. And up until recently I have not entirely understood what I needed to mourn.  I have also read blog after blog about how people say the craziest things to people with cancer.   And again I didn’t understand that until recently, either.  Working in the disability field I'm used to subtly correcting people because people truly don’t know what to say in an uncomfortable situation.  But recently, I have heard the most hurtful things that even I couldn't push aside.  Of course I tried, but after a month I finally broke down. I'm strong, I'm a Capricorn. We are strong, confident people for the most part. But I'm not indestructible, and I can feel.  I mean, I feel all the time!  I feel fear, sadness, loss, disappointment, and so much more. I’m just great at hiding th...

Before breast cancer decided to impact my life, I worked a lot but I didn’t mind.  I personally have known I wanted to help people with disabilities since I was a young girl.  Unlike my friends in college who did not know what they wanted to do when they grew up, I knew what the track was for me.  I attended Southern Connecticut State University to study Therapeutic Recreation with a focus on disability studies.  Including people with disabilities within their communities was always something very important to me.  After gaining experience in different aspects in the field I knew for me to be truly happy I would probably need to break off and start my own agency to help individuals with disabilities and their families.  In 2014, my boss passed away to cancer and I knew it was time to jump and take a risk.  By 2015, I gave my notice and announced the beginning of Community Navigators, a non-profit driven to help create inclusive opportunities in individ...

Before breast cancer decided to impact my life, I worked a lot but I didn’t mind.  I personally have known I wanted to help people with disabilities since I was a young girl.  Unlike my friends in college who did not know what they wanted to do when they grew up, I knew what the track was for me.  I attended Southern Connecticut State University to study Therapeutic Recreation with a focus on disability studies.  Including people with disabilities within their communities was always something very important to me.  After gaining experience in different aspects in the field I knew for me to be truly happy I would probably need to break off and start my own agency to help individuals with disabilities and their families.  In 2014, my boss passed away to cancer and I knew it was time to jump and take a risk.  By 2015, I gave my notice and announced the beginning of Community Navigators, a non-profit driven to help create inclusive opportunities in individ...

With all the awareness that is out there and how common breast cancer is, most people have no clue what Metastatic Breast Cancer is!  At least once a week I meet someone who has never heard of Metastatic Breast Cancer.  People hear of woman dying from breast cancer but usually you see the emphasis on “survivors.” People think that breast cancer is a scary phase of someone’s life, which it is but you will ultimately overcome it.  And boy do I wish that was my case. Most people who talk to me say, “You will beat this” or “How much longer do you have in treatment” or someone who was once close to me said, “well you look healthy so you must be.” Now to defend everyone. Almost everyone (except one person I have encountered) truly do not mean to be insensitive.  It’s just that breast cancer awareness focuses on prevention and lower stages like stages 0-3.  You hear stories of survivors that they had a lumpectomy or a double mastectomy, chemotherapy, radiation a...

With all the awareness that is out there and how common breast cancer is, most people have no clue what Metastatic Breast Cancer is!  At least once a week I meet someone who has never heard of Metastatic Breast Cancer.  People hear of woman dying from breast cancer but usually you see the emphasis on “survivors.” People think that breast cancer is a scary phase of someone’s life, which it is but you will ultimately overcome it.  And boy do I wish that was my case. Most people who talk to me say, “You will beat this” or “How much longer do you have in treatment” or someone who was once close to me said, “well you look healthy so you must be.” Now to defend everyone. Almost everyone (except one person I have encountered) truly do not mean to be insensitive.  It’s just that breast cancer awareness focuses on prevention and lower stages like stages 0-3.  You hear stories of survivors that they had a lumpectomy or a double mastectomy, chemotherapy, radiation a...