About being in the prime of your life and learning you have cancer.
My husband has a motto: Sweat the small stuff. It's funny, and if you think about it, you may as well, because sometimes the big stuff is just so big that if you think about it you'll just have to crawl under the covers and never come back out.
I went for a mammogram yesterday. This weekend I'll keep nice and busy and wait for my results Monday or Tuesday. I'm sure they'll be fine. I go every year right around now. At this point, you are probably thinking I am a breast cancer survivor. I am not.
Here is my story.
It was about twenty-one years ago. I know a lot of people would remember the exact day they were diagnosed. I don't, but I know it was in January of 1991.
It was about twenty-one years ago. I know a lot of people would remember the exact day they were diagnosed. I don't, but I know it was in January of 1991.
I'll back up a little bit.
My second child, a perfect, beautiful daughter, was born on September 18, 1990. Our first child, a son greeted his baby sister with delight, and relatives glowed to see that a baby girl had finally arrived to the family on the Cantor side... where we had so far only had boys. We named her for my beloved grandmother, who passed away only two weeks after my Bat Mitzvah and her naming was a joyous affair at my parents' house.
It took a while for me to get my energy back after this baby though. In fact, I never did seem to get my energy back. Unlike after my first pregnancy, I was lethargic and napped each time the baby napped. I shed the weight quickly, which I thought was great, but developed a slight cough, and then a skin rash which spread from my knees and elbows to my arms and legs... and then suddenly... everywhere.
I finally dragged myself, upon my mother's insistence, to the dermatologist,who took a look at me and decided I should be hospitalized.
WHAT?
This is one of those life changing moments when you seem to catch up to the others who are seeing things way before you. It's a skin rash. I'm just tired. It's post-partum! I have a new baby. I can't go to the hospital. And, Dr. Fine (his real name and the man who saved my life) wants me at NYU Medical Center. I live in New Jersey. We have hospitals here, in fact, my dad works at a great hospital here... I JUST HAD MY BABY THREE MONTHS AGO AT A HOSPITAL HERE! I didn't seem to have a say, and people around me all had this solemn and serious manner.
I went, of course. I don't remember packing. I was placed on the Dermatology floor, since the primary cause for alarm was a skin rash that was, as yet, undiagnosed and spreading like crazy. The next few days were a blur...the itching was unbearable and no amount of creams, or antihistamines brought relief...a lot of tests, a lot of poking and prodding, stronger medication, steroids, that made my face turn into a big round dumpling, and ruined my appetite and my sleep, but also gave me back my energy... and the itching is giving way to blisters and hives. A week goes by. I had a few visitors, but mostly I wanted to make sure that my children were being taken care of. Save your schlep into the City, and help by driving my son to Nursery School and my daughter to my parents' house.
I kept busy by watching tv, reading, when I could focus, and looking after my elderly roommate. Mrs. Rosenbloom was a tiny woman, of an undisclosed age, with the nastiest infection on her leg that I have ever since, before or since. It was gross, and she was feeling pretty bad for herself... and was a bit of a kvetch. I think she saw my placement in the bed next to her as the arrival (AT LAST) of that private nurse she had been hoping for. I helped her get up and down from bed, change the tv channels, order food, and translate what the doctors were telling her, from "Doc speak" to "Little Old Lady from the Old County" speak.
Midmorning:
"Are you Kosher, Mrs. Rosenbloom?"
"No, no. Just tell me what they have."
"Okay, they have the matza ball soup, the turkey sandwich, the chicken pot pie, or the ham and cheese."
She looks up suddenly.
"Oh, is that what you want, the ham and cheese?"
"NO!" She screams at me. "That's trayfe!*"
It's funny the things you remember.
The tests were endless. At this point, I'm feeling better, missing my children so badly it feels like a physical ache, and losing my patience for the patient next to me. I have been given a Gameboy (the first one ever made, I believe) by my husband, and I learn to play Doctor Mario. I see a lot more of Doctor Mario, than any other doctor at NYU Medical Center, and he and I get pretty good at gobbling up germs.
On one occasion, when my dad, a doctor, was visiting, he heard me coughing, and I guess my cough had worsened by this point. He asked if I had gotten a chest x-ray. I hadn't. With the myriad of tests I had been subject to, a simple x-ray was not one of them.
On day ten, an x-ray showed a grapefruit-sized tumor in my chest.
I met with a top notch thoracic surgeon who gruffly let me know just how busy he was and how lucky I was he was squeezing me in to perform a biopsy on this "mass." Yep. Feeling pretty lucky. I remember lying there, thinking about his abrupt nature and callous attitude; wishing I could tell him that a person was lying here in this body. This "person" has two babies at home and a huge tumor in her chest and right now her time is way more valuable than his, no matter how famous he might be in the medical world.
That night I dreamed I was shot in the chest.
The biopsy showed that the mass was indeed cancer, and it is a blur now how we learned that it was Hodgkin's Lymphoma. A more treatable type. After several more uncomfortable and invasive tests to see how far this cancer spread, I was finally promised I could leave the hospital. 15 days later.
I do not remember coming home, or hugging my children that first day. I don't remember sleeping in my bed that first night. I remember the sickening feeling of anxiety that would overwhelm me. I went in to NYU Medical Center for more tests to discover if I would need chemotherapy and radiation, or just radiation. Thanks to the fact the the bone marrow biopsy was clean, I met with the oncologist and he said we could try just radiation for 12 weeks and see if that would work. If not, then we would have to introduce chemotherapy. I told him about my anxiety and my difficulty sleeping. He prescribed Valium, and told me it was normal. He did not say I'd be fine. He did say my prognosis was good. I trusted him.
The radiation treatment became my new job. A really horrible job, where you dread going in, your co-workers are nice and you feel like puking all day when you are done. You are never comfortable, or happy, and there's always someone much worse off than you. To make sure that you don't get zapped in the wrong spots, you get tiny little tattoo marks on your body so that the machine gets lined up correctly.
The radiation did burn out the cancer... and while it made me feel bad, the medical marijuana helped a lot during that time. I'm not getting on the political bandwagon about that right now, but it saved the day, gave me an appetite, and no, I would never have considered smoking it, I could barely swallow from the radiation. It was a tiny little pill that was legal even then.
I had to go in to New York every day for 12 weeks. I took only one day off (which I had to make up at the end) for a dear friend's wedding, and I also remember truckin' up to Buffalo to see the Grateful Dead. Nothing like a little music therapy to soothe the soul. I remember my husband and I each took our younger brothers to the concerts and though I didn't have my usual energy, remember feeling wrapped in love that weekend.
When the treatment was over, it was time to get back to life. Was I cured? The tumors had shrunk down, and would continue to shrink. I was to go to the doctor every three months for scans for the next year. Will I be able to have more children? I was told no, and not to try, due to the radiation and the damage it likely had done to my ovaries. And I would not be able to breast feed.
I got back to work, and enjoyed my children. We went to Seaside Heights in the summers, and saw the Grateful Dead when they came around. I went to my doctor appointments and each time got good news. The cancer was disappearing. No new signs of cancer were showing up anywhere. The side effects of the treatment were vanishing.
After no trace of the lymphoma or other blood disorders for three years, and defying my doctor, we did have another child, a healthy boy.
He was born on Shavuot... this is the Jewish holiday when we received the law on Mount Sinai... so we gave him the middle name of "N'tanel" which translates to mean "Gift of God."
The little tattoo marks are still there, as my constant reminders that I am Super Woman. So is my scar from my biopsy. I don't try to hide it when I wear a v-neck top, I'm proud that I am a survivor.
And most of the time I don't think about it. Until I do. Like now, when I am waiting for that phone call that tells me I don't need to go back for a mammogram for another year.
*Yiddish word for not Kosher.
My second child, a perfect, beautiful daughter, was born on September 18, 1990. Our first child, a son greeted his baby sister with delight, and relatives glowed to see that a baby girl had finally arrived to the family on the Cantor side... where we had so far only had boys. We named her for my beloved grandmother, who passed away only two weeks after my Bat Mitzvah and her naming was a joyous affair at my parents' house.
It took a while for me to get my energy back after this baby though. In fact, I never did seem to get my energy back. Unlike after my first pregnancy, I was lethargic and napped each time the baby napped. I shed the weight quickly, which I thought was great, but developed a slight cough, and then a skin rash which spread from my knees and elbows to my arms and legs... and then suddenly... everywhere.
I finally dragged myself, upon my mother's insistence, to the dermatologist,who took a look at me and decided I should be hospitalized.
WHAT?
This is one of those life changing moments when you seem to catch up to the others who are seeing things way before you. It's a skin rash. I'm just tired. It's post-partum! I have a new baby. I can't go to the hospital. And, Dr. Fine (his real name and the man who saved my life) wants me at NYU Medical Center. I live in New Jersey. We have hospitals here, in fact, my dad works at a great hospital here... I JUST HAD MY BABY THREE MONTHS AGO AT A HOSPITAL HERE! I didn't seem to have a say, and people around me all had this solemn and serious manner.
I went, of course. I don't remember packing. I was placed on the Dermatology floor, since the primary cause for alarm was a skin rash that was, as yet, undiagnosed and spreading like crazy. The next few days were a blur...the itching was unbearable and no amount of creams, or antihistamines brought relief...a lot of tests, a lot of poking and prodding, stronger medication, steroids, that made my face turn into a big round dumpling, and ruined my appetite and my sleep, but also gave me back my energy... and the itching is giving way to blisters and hives. A week goes by. I had a few visitors, but mostly I wanted to make sure that my children were being taken care of. Save your schlep into the City, and help by driving my son to Nursery School and my daughter to my parents' house.
I kept busy by watching tv, reading, when I could focus, and looking after my elderly roommate. Mrs. Rosenbloom was a tiny woman, of an undisclosed age, with the nastiest infection on her leg that I have ever since, before or since. It was gross, and she was feeling pretty bad for herself... and was a bit of a kvetch. I think she saw my placement in the bed next to her as the arrival (AT LAST) of that private nurse she had been hoping for. I helped her get up and down from bed, change the tv channels, order food, and translate what the doctors were telling her, from "Doc speak" to "Little Old Lady from the Old County" speak.
Midmorning:
"Are you Kosher, Mrs. Rosenbloom?"
"No, no. Just tell me what they have."
"Okay, they have the matza ball soup, the turkey sandwich, the chicken pot pie, or the ham and cheese."
She looks up suddenly.
"Oh, is that what you want, the ham and cheese?"
"NO!" She screams at me. "That's trayfe!*"
It's funny the things you remember.
The tests were endless. At this point, I'm feeling better, missing my children so badly it feels like a physical ache, and losing my patience for the patient next to me. I have been given a Gameboy (the first one ever made, I believe) by my husband, and I learn to play Doctor Mario. I see a lot more of Doctor Mario, than any other doctor at NYU Medical Center, and he and I get pretty good at gobbling up germs.
On one occasion, when my dad, a doctor, was visiting, he heard me coughing, and I guess my cough had worsened by this point. He asked if I had gotten a chest x-ray. I hadn't. With the myriad of tests I had been subject to, a simple x-ray was not one of them.
On day ten, an x-ray showed a grapefruit-sized tumor in my chest.
I met with a top notch thoracic surgeon who gruffly let me know just how busy he was and how lucky I was he was squeezing me in to perform a biopsy on this "mass." Yep. Feeling pretty lucky. I remember lying there, thinking about his abrupt nature and callous attitude; wishing I could tell him that a person was lying here in this body. This "person" has two babies at home and a huge tumor in her chest and right now her time is way more valuable than his, no matter how famous he might be in the medical world.
That night I dreamed I was shot in the chest.
The biopsy showed that the mass was indeed cancer, and it is a blur now how we learned that it was Hodgkin's Lymphoma. A more treatable type. After several more uncomfortable and invasive tests to see how far this cancer spread, I was finally promised I could leave the hospital. 15 days later.
I do not remember coming home, or hugging my children that first day. I don't remember sleeping in my bed that first night. I remember the sickening feeling of anxiety that would overwhelm me. I went in to NYU Medical Center for more tests to discover if I would need chemotherapy and radiation, or just radiation. Thanks to the fact the the bone marrow biopsy was clean, I met with the oncologist and he said we could try just radiation for 12 weeks and see if that would work. If not, then we would have to introduce chemotherapy. I told him about my anxiety and my difficulty sleeping. He prescribed Valium, and told me it was normal. He did not say I'd be fine. He did say my prognosis was good. I trusted him.
The radiation treatment became my new job. A really horrible job, where you dread going in, your co-workers are nice and you feel like puking all day when you are done. You are never comfortable, or happy, and there's always someone much worse off than you. To make sure that you don't get zapped in the wrong spots, you get tiny little tattoo marks on your body so that the machine gets lined up correctly.
The radiation did burn out the cancer... and while it made me feel bad, the medical marijuana helped a lot during that time. I'm not getting on the political bandwagon about that right now, but it saved the day, gave me an appetite, and no, I would never have considered smoking it, I could barely swallow from the radiation. It was a tiny little pill that was legal even then.
I had to go in to New York every day for 12 weeks. I took only one day off (which I had to make up at the end) for a dear friend's wedding, and I also remember truckin' up to Buffalo to see the Grateful Dead. Nothing like a little music therapy to soothe the soul. I remember my husband and I each took our younger brothers to the concerts and though I didn't have my usual energy, remember feeling wrapped in love that weekend.
When the treatment was over, it was time to get back to life. Was I cured? The tumors had shrunk down, and would continue to shrink. I was to go to the doctor every three months for scans for the next year. Will I be able to have more children? I was told no, and not to try, due to the radiation and the damage it likely had done to my ovaries. And I would not be able to breast feed.
I got back to work, and enjoyed my children. We went to Seaside Heights in the summers, and saw the Grateful Dead when they came around. I went to my doctor appointments and each time got good news. The cancer was disappearing. No new signs of cancer were showing up anywhere. The side effects of the treatment were vanishing.
After no trace of the lymphoma or other blood disorders for three years, and defying my doctor, we did have another child, a healthy boy.
He was born on Shavuot... this is the Jewish holiday when we received the law on Mount Sinai... so we gave him the middle name of "N'tanel" which translates to mean "Gift of God."
The little tattoo marks are still there, as my constant reminders that I am Super Woman. So is my scar from my biopsy. I don't try to hide it when I wear a v-neck top, I'm proud that I am a survivor.
And most of the time I don't think about it. Until I do. Like now, when I am waiting for that phone call that tells me I don't need to go back for a mammogram for another year.
*Yiddish word for not Kosher.
Today's blog is dedicated to all those who are fighting cancer, who love someone who is, or lost someone because of it.
Feb. 29, Leap Day, 2012... got the results of my mammogram today. This is the one case where I like being told I'm "normal." Leap day... an extra day in every four years...despite the fact it's somewhat cold and rainy, I'll consider it the gift that it is and gift it back to others today.
And the healthy baby boy I mentioned above has just gotten in to Tufts, and will be starting there in the fall.
Juliet, you are an amazing woman whose stories are always full of surprises and valuable life lessons. Yasher koach!
ReplyDeleteThanks for your comment. That's one crazy name you have there. How do you pronounce it? I'll call you dd.
ReplyDeleteI hemmed and hawed about this story, because there's so much that I left out... Maybe I'll put it in the book. :)
I remember this well, my dear! Glad all's well with you. Love you -- Michael
ReplyDeleteMichael, I still have the beaded earrings you sent me when I was going through radiation. You may not even remember that small act of kindness but I do, and it was such a joy to open the little package and find such a perfect and groovy gift. I still wear them to Furthur shows and other appropriate occasions. I'll post a picture of them here on the blog. Love love love, Juliet
ReplyDeleteAmazing story! Thanks for sharing it!
ReplyDeleteI am appreciative and inspired by how much better you make the world... A giving, generous and beautiful soul... I am glad you are still around. Keep on truckin in your juliet way!
ReplyDelete