- Published on
The day after having all my hair shaved off. I don't actually have many memories of this time.
I had been feeling utterly, utterly exhausted during the first session of camp. More so than usual. Worn out by tasks that hadn’t ever given me grief, and puffed from walks up a short hill. A few days before I was due for two days off (a once-a-summer luxury that is prized and cherished), I noticed two bumps, one on each shin, that I assumed were spider bites. My legs were covered in mosquito bites, the bumps only hurt to the touch, and to be honest, I just didn’t have time to worry about them. I was working 14 hour days, and just too damn tired to care.
Double day off finally arrived, a small group of us headed to the Catskills for our well-earned weekend away, and all I could do was sleep. The bumps turned into circular raised red bumps that hurt like hell. My ankles and feet became puffy. We went out for dinner, and the sight and smell of food made me feel ill. I went for a walk while our group finished eating. We went home and I collapsed back into bed. Throughout the night I slept fitfully and had fevers. At 6am, feeling absolutely awful, I asked my husband, Aaron, to take me to the doctor.
The kindly doctor said she had not seen anything like my legs before, but she had seen several camp counselors this summer with infected bug bites. She prescribed an antibiotic and told me to go the hospital if I wasn’t feeling better in two days.
The next morning, a Monday, we drove back to camp. Walking was agony. Sitting up made me delirious. But theatre auditions could not wait. I was propped up on a couch and we started auditions for RENT. It was self-inflicted torture. My friends begged me to go to the infirmary. But I was insistent. There was NO WAY I was missing auditions. I love my theatre babies, and I was going to be there for them. I would sit up for the kids when they came in to sing, dance, and read their scenes, and between groups I’d lie back down, feeling like I had the worst flu in the history of the world.
By 2pm, I was done. I wanted to throw up. My legs were aching like nothing I had known. I sat outside the Actor’s Studio and sobbed. My friend Johnny happened to come by and took me to the infirmary. I fell onto the bed and didn’t get up again, except to go to the toilet and ask the nurse for more tylenol. Throughout the night I threw up twice, and sobbed. In the morning, the doctor took one look at me and told me to go to hospital.
Aaron drove me up, and supported me as I hobbled into the ER. I was admitted, blood was drawn, and I lay in bed feeling terrible. The doctor came by. Now I don’t want to upset or frighten you, but you’re going to the hear the word ‘cancer’. Your white blood cell count is astronomically high. Que?! I’m an organic vegetarian runner who meditates, rarely drinks, and never smokes. People like me don’t get cancer.
Dr Lombardo. Oncologist. What the hell is happening. Breathe. Bone marrow biopsy. Hold Aaron’s hand. Scream. WT actual F. This is awful. Why is this happening?! Breathe breathe breathe.
Sleep overnight in the hospital. Aaron is with me. The next day, I tell Aaron to go to his work call at camp. The camp director, Laura, comes to visit. She is sitting next to me and holding my hand. Dr Lombardo is in front of me. Luisa, you have leukemia and we need to transfer you to Danbury Hospital for treatment. A million questions in my head. I ask her what would happen if I don’t have the treatment. She looks at me directly. You’ll be dead in a month. Oh. My. God. Is this real?
To be honest, the next two weeks in my mind are a complete blur. I remember being in the ambulance. I remember being wheeled into my room at Danbury and thinking how beautiful the view was. I remember Jesse and Brenda, my wonderful amazing glorious parents-in-law, holding my hand and comforting me. I remember Aaron never leaving my side and being the most supportive and loving husband a person could ever wish for. I remember Mum, and my sister, Anita, arriving and rushing into the room and being simultaneously thrilled to see me after a long separation, and devastated that I was so sick. I remember Adrienne shaving my hair off, and seeing Emma with the same new do. And that’s about it. I’ve since been told of all the friends who visited, of nurses trying to tell me the side effects of chemo while I fell asleep mid-sentence, and of week long hallucinations where I thought I was surrounded by campers, needed to be working on stuff for RENT, and was touring with a band. I was dosed up on morphine for my legs, receiving chemo, and delirious.
As our families and close friends were informed, support started flooding in. Emails, flowers, cards. People asking: what can we do? Aaron and Anita set up a GoFundMe page and shared it on facebook. In three weeks we raised over $25,000. We knew we wouldn’t have to worry about the inevitable hospital bills and a huge weight was taken off our shoulders. Friends from camp gave up their days off to come and help run errands. They baked treats and bought me fresh food. They opened up their houses for our families to stay. We received literally hundreds and hundreds of messages of support and love, by email, card, and telephone.
And here is the entire point of this long post. We received donations, cards, gifts, flowers and messages of love and support from across the entire world. People who I haven’t even met who are friends and relatives of my own friends and relatives got in touch. From every aspect of my thirty years on earth, from primary school through to both my high schools, to university, theatre productions, travel friends, London, Buck’s Rock, and all manner of things in between. People wrote messages of how much I had inspired them, how my positivity had uplifted them, how I had been a light in their lives. Many people wrote how my writing had moved them. I had not heard from some of these people in close to twenty years. It was incredible. It was overwhelming. It was uplifting.
One friend wrote:
Double day off finally arrived, a small group of us headed to the Catskills for our well-earned weekend away, and all I could do was sleep. The bumps turned into circular raised red bumps that hurt like hell. My ankles and feet became puffy. We went out for dinner, and the sight and smell of food made me feel ill. I went for a walk while our group finished eating. We went home and I collapsed back into bed. Throughout the night I slept fitfully and had fevers. At 6am, feeling absolutely awful, I asked my husband, Aaron, to take me to the doctor.
The kindly doctor said she had not seen anything like my legs before, but she had seen several camp counselors this summer with infected bug bites. She prescribed an antibiotic and told me to go the hospital if I wasn’t feeling better in two days.
The next morning, a Monday, we drove back to camp. Walking was agony. Sitting up made me delirious. But theatre auditions could not wait. I was propped up on a couch and we started auditions for RENT. It was self-inflicted torture. My friends begged me to go to the infirmary. But I was insistent. There was NO WAY I was missing auditions. I love my theatre babies, and I was going to be there for them. I would sit up for the kids when they came in to sing, dance, and read their scenes, and between groups I’d lie back down, feeling like I had the worst flu in the history of the world.
By 2pm, I was done. I wanted to throw up. My legs were aching like nothing I had known. I sat outside the Actor’s Studio and sobbed. My friend Johnny happened to come by and took me to the infirmary. I fell onto the bed and didn’t get up again, except to go to the toilet and ask the nurse for more tylenol. Throughout the night I threw up twice, and sobbed. In the morning, the doctor took one look at me and told me to go to hospital.
Aaron drove me up, and supported me as I hobbled into the ER. I was admitted, blood was drawn, and I lay in bed feeling terrible. The doctor came by. Now I don’t want to upset or frighten you, but you’re going to the hear the word ‘cancer’. Your white blood cell count is astronomically high. Que?! I’m an organic vegetarian runner who meditates, rarely drinks, and never smokes. People like me don’t get cancer.
Dr Lombardo. Oncologist. What the hell is happening. Breathe. Bone marrow biopsy. Hold Aaron’s hand. Scream. WT actual F. This is awful. Why is this happening?! Breathe breathe breathe.
Sleep overnight in the hospital. Aaron is with me. The next day, I tell Aaron to go to his work call at camp. The camp director, Laura, comes to visit. She is sitting next to me and holding my hand. Dr Lombardo is in front of me. Luisa, you have leukemia and we need to transfer you to Danbury Hospital for treatment. A million questions in my head. I ask her what would happen if I don’t have the treatment. She looks at me directly. You’ll be dead in a month. Oh. My. God. Is this real?
To be honest, the next two weeks in my mind are a complete blur. I remember being in the ambulance. I remember being wheeled into my room at Danbury and thinking how beautiful the view was. I remember Jesse and Brenda, my wonderful amazing glorious parents-in-law, holding my hand and comforting me. I remember Aaron never leaving my side and being the most supportive and loving husband a person could ever wish for. I remember Mum, and my sister, Anita, arriving and rushing into the room and being simultaneously thrilled to see me after a long separation, and devastated that I was so sick. I remember Adrienne shaving my hair off, and seeing Emma with the same new do. And that’s about it. I’ve since been told of all the friends who visited, of nurses trying to tell me the side effects of chemo while I fell asleep mid-sentence, and of week long hallucinations where I thought I was surrounded by campers, needed to be working on stuff for RENT, and was touring with a band. I was dosed up on morphine for my legs, receiving chemo, and delirious.
As our families and close friends were informed, support started flooding in. Emails, flowers, cards. People asking: what can we do? Aaron and Anita set up a GoFundMe page and shared it on facebook. In three weeks we raised over $25,000. We knew we wouldn’t have to worry about the inevitable hospital bills and a huge weight was taken off our shoulders. Friends from camp gave up their days off to come and help run errands. They baked treats and bought me fresh food. They opened up their houses for our families to stay. We received literally hundreds and hundreds of messages of support and love, by email, card, and telephone.
And here is the entire point of this long post. We received donations, cards, gifts, flowers and messages of love and support from across the entire world. People who I haven’t even met who are friends and relatives of my own friends and relatives got in touch. From every aspect of my thirty years on earth, from primary school through to both my high schools, to university, theatre productions, travel friends, London, Buck’s Rock, and all manner of things in between. People wrote messages of how much I had inspired them, how my positivity had uplifted them, how I had been a light in their lives. Many people wrote how my writing had moved them. I had not heard from some of these people in close to twenty years. It was incredible. It was overwhelming. It was uplifting.
One friend wrote:
From when you first heard the bad news, to when you will recover, what has formed for you is a HUGE web of love because you have so much love around you. This will act as a safety net for you to fall back into, and trust me, it will catch you whenever you feel like falling.
He was entirely right. This may have been the scariest, most confronting, most shocking thing to ever happen to me. Instead, it has shown me the web of love I live in. I didn’t really know it before. I had no idea how expansive it was. In my closest circles, I had no idea how limitless and unconditional it was. And as cheesy and corny as it sounds, that love was healing and uplifting and wrapped around me constantly over the past month. Yes, all my doctors and nurses were amazing and treated me with the utmost care. There is no denying modern medicine and science saved my life. But the web of love got me through it.
Being told at Danbury I needed more treatment because the cancer cells were at 50% was devastating. Moving to a world-renowned cancer hospital on the upper east side wasn’t quite my plan for moving to New York. But, after being transfered to Sloan Kettering, my blood counts started returning to normal. I was taken off the restricted diet. After a third bone marrow biopsy, the cancer cells were down to 6% and I was told I could go home.
There is still a ways to go. I will need further chemo treatment until I have a bone marrow transplant. I'm almost completely bald, I’m utterly exhausted and small tasks completely wear me out. But I can’t even begin to describe how awesome I feel. I’M HOME WITH MY LOVE! We’re finally living in New York! I am surrounded, enveloped, and filled with love and support!
Being near-death is the strangest way to discover it. But I am so glad I have. And I'm not ready for my actual funeral yet. It’s my thirtieth in a couple of weeks, and I plan to CELEBRATE. My birthday wish is that you reach out to the people you love. Tell them you love them. Tell the writer you love reading that you love their work. Tell your friends how much you appreciate them. Send cards. Write letters. Don’t wait. Life is short and unexpected and full of batshit crazy events. Go to it!
Thank you to you all, with deepest love,
Lu xxx
Being told at Danbury I needed more treatment because the cancer cells were at 50% was devastating. Moving to a world-renowned cancer hospital on the upper east side wasn’t quite my plan for moving to New York. But, after being transfered to Sloan Kettering, my blood counts started returning to normal. I was taken off the restricted diet. After a third bone marrow biopsy, the cancer cells were down to 6% and I was told I could go home.
There is still a ways to go. I will need further chemo treatment until I have a bone marrow transplant. I'm almost completely bald, I’m utterly exhausted and small tasks completely wear me out. But I can’t even begin to describe how awesome I feel. I’M HOME WITH MY LOVE! We’re finally living in New York! I am surrounded, enveloped, and filled with love and support!
Being near-death is the strangest way to discover it. But I am so glad I have. And I'm not ready for my actual funeral yet. It’s my thirtieth in a couple of weeks, and I plan to CELEBRATE. My birthday wish is that you reach out to the people you love. Tell them you love them. Tell the writer you love reading that you love their work. Tell your friends how much you appreciate them. Send cards. Write letters. Don’t wait. Life is short and unexpected and full of batshit crazy events. Go to it!
Thank you to you all, with deepest love,
Lu xxx