Sobering - I'm a Patient at the Cancer Center (Part 2)
Got your attention, didn't it? Well, if you haven't read my previous blog Sobering - Part 1 (click on the title to be taken to the blog) then you should probably take the opportunity to do that now so you'll understand what I'm talking about.
Continued from "Sobering - Part 1"
I called my primary care doctor's office the next morning and explained what was going on and they contacted the Hematologist for me and called me back and told me to expect a call from them. So, about 30 minutes later I get a call that went something like this:
Me: Hello?
Office Person: Hello! This is Medical Consultants. We've scheduled you for an appointment at 11 am with one of our Nurse Practitioners. Are you familiar with where we are located in the hospital?
Me: Yes, you're over in the Outpatient Pavilion with the other Medical Consultant offices right?
Office Person: Well, no. Our offices are in the Cancer Center at Ball Memorial Hospital. The doctor who will be managing your care is a Hematologist/Oncologist and our offices are there. Do you know where that is?
Me: The Cancer Center... My appointment is in the Cancer Center?!?
Office Person: Yes, do you know where that is?
Me: Uh... The Cancer Center? Um... What?
Office Person: Yes, The Cancer Center. The Nurse Practitioner, Nurse X, can explain everything when you get here.
Okay, so I don't have to tell you where my mind went as soon as I heard the words "Oncologist" and "Cancer Center". The person on the phone obviously picked up on some of the panic in my voice but she really couldn't tell me much since she most likely didn't know the particulars of my case in the first place. So I called my sister and told her that I had an appointment at the Cancer Center and her reaction was a little more tame than mine.
So, we go to the Cancer Center and wait in the waiting room with all these other people in various stages of cancer and I'm so nervous that I feel as if I could throw up at any moment. Finally, after what seemed like years, my name was called and my sister and I went back to a treatment room. The Nurse Practitioner started in about my platelet levels and told me that I'd be going back on steroids and I would meet with Dr. X tomorrow morning but for now they were sending me up to the Oncology floor. She had yet to tell me why I was being seen by an Oncologist or why I had to go to the Cancer Center. So I finally said "So is this ITP or something else... like you know... Cancer..." and she replied "Oh, God... It's ITP. I didn't realize you thought you had cancer. I guess coming to the Cancer Center and hearing words like Oncologists and Oncology would make you think that though..." YOU THINK?!?
So, I had to go to registration and register and then go up to Oncology. Now here comes the sobering part... I had to have an IVIG treatment, which takes about 8 hours. They put me in a room with three other people, all of which had some form of cancer and all were receiving chemotherapy. So, for 8 hours I had to sit in this room with my fellow patients and I realized that for them it isn't as simple as receiving two 8 hour treatments and going on steroids. For them, it's countless chemo treatments and everything that comes with that and the small hope that their cancer will go into remission and that some day there may be a cure. As I sat there humbled by their grace and strength and their perseverance I found myself at a loss for words. Conversations about chemo and nausea and hair falling out blended in with conversations about the best pizza in town and amazing new recipes and whirled around the room and I sat in stunned silence. Later that day they had to stop my treatment because I started having a reaction to it. Suddenly I was freezing and went pale and my lips turned blue. They brought me blankets and checked my oxygen level and stopped treatment and paged the Nurse Practitioner. From the corner of the room, and older gentleman spoke up and said "The young one is gonna be okay isn't she?" and he looked at me with genuine concern. This man who has advanced cancer is worried about me? The compassion he showed was awe inspiring and heartwarming. Several hours later when my treatment had finished he was still there receiving his chemotherapy and he smiled and waved at me and said "Maybe, God willing, I'll see you around again." I came back the next day for another treatment but he wasn't there. The room was empty when I first started but as the day went on people came and went for treatments such as iron and various drugs associated with treating blood related diseases. I was there for 8 hours and didn't leave until around 9 pm. When I left there was one older woman, a small fragile woman who had come in around 3 pm, who was still receiving a chemo treatment and infusion of something else. She smiled at me and said "God bless you on your journey" and closed her eyes as I walked out of the room.
Over the next year I went from bi-weekly to monthly to 6 month appointments with the Hematologist/Oncologist and his Nurse Practitioner. I would go to the Outpatient Lab 1 or 2 days before and get blood drawn and then I'd wait for the appointment and the news as to whether my platelet levels and white blood cell counts were normal. Every day I sat in the lobby of the Cancer Center and listened to the other patients talk about diagnosis and treatment and prognosis and life expectancy. I listened as they talked about nausea and loss of appetite and energy. I listened to them talk about fearing they wouldn't get to see their grandchilden or children grow up. I listened as some of them talked about being in remission and how they felt better than they had in a long time but feared with each appointment that they'd get that dreaded news that the cancer was back. Then one day the news did come for one of them, yes the cancer was back and it had spread. I tried not to be intrusive as they talked about fighting and being tired of the fight. I listened as they talked about how they weren't ready to say goodbye to their family. One day a young woman who couldn't have been much older than me came in for an appointment. When she came out to greet her nervous family the news not only brought tears to their eyes, but mine as well. Yes, she had cancer. It was in it's beginning stages but she needed to be hospitalized immediately for exploratory surgery, more testing to make sure it hadn't spread to other organs and starting treatment. My heart was racing and tears were streaming and I finally got up and moved away to give them more privacy. I felt as if I were intruding on one of the most defining and life-changing moments this family would ever have. The mother caught my eye as I moved away and smiled a weak smile and nodded in thanks and understanding. But I barely managed to return it as I sat down and waited nervously for my appointment. It occurred to me that whatever news the doctor had for me couldn't possibly be as life-changing or devastating as the news that young woman just received. For me a relapse meant more IVIG treatments and steroids. It wasn't a death sentence it was just a set-back, but what about those patients who hear the word "cancer" at their appointments? It was all very sobering.
I had an appointment with the Hematologist/Oncologist last Wednesday (April 18, 2012) and he gave me the news I had wanted to hear. I have been symptom free and in "remission" from ITP for 1 year and 29 days. My next appointment isn't until April of next year, unless I have symptoms and then I have to make an appointment immediately. But for now, I'm in the clear and there's a possibility and hope that is unique and different than most of the other patients, that it might not come back at all. As I walked out of the Cancer Center that day with a smile on my face I was reminded of my experiences over the last year and 29 days. I was reminded of my personal connection with cancer and how much I despised the disease.
My grandmother passed away on January 19, 1994 from cancer. She'd been ill on and off for as long as I could remember. She always seemed to beat it and come back though and she was a symbol of courage and strength for me and my family. Finally, in her final stages of cancer, she opted to come home instead of going to a hospice because she wanted to die at home. My family took care of her in her final days. I remember the final year of my grandmother's life and how she slowly slipped away. I remember how the disease slowly robbed her of everything she had and left her a small and scared little old woman dying. For me cancer is personal and with my latest illness and treatment at the Cancer Center came the reminder that life is precious. We must live every day with the knowledge that it could very well be our last. So, let the people you love know you love and appreciate them. Never take anything or anyone for granted. Take every opportunity to enjoy this beautiful struggle and journey we call life...
Live well. Laugh often. Love more.
Continued from "Sobering - Part 1"
I called my primary care doctor's office the next morning and explained what was going on and they contacted the Hematologist for me and called me back and told me to expect a call from them. So, about 30 minutes later I get a call that went something like this:
Me: Hello?
Office Person: Hello! This is Medical Consultants. We've scheduled you for an appointment at 11 am with one of our Nurse Practitioners. Are you familiar with where we are located in the hospital?
Me: Yes, you're over in the Outpatient Pavilion with the other Medical Consultant offices right?
Office Person: Well, no. Our offices are in the Cancer Center at Ball Memorial Hospital. The doctor who will be managing your care is a Hematologist/Oncologist and our offices are there. Do you know where that is?
Me: The Cancer Center... My appointment is in the Cancer Center?!?
Office Person: Yes, do you know where that is?
Me: Uh... The Cancer Center? Um... What?
Office Person: Yes, The Cancer Center. The Nurse Practitioner, Nurse X, can explain everything when you get here.
Okay, so I don't have to tell you where my mind went as soon as I heard the words "Oncologist" and "Cancer Center". The person on the phone obviously picked up on some of the panic in my voice but she really couldn't tell me much since she most likely didn't know the particulars of my case in the first place. So I called my sister and told her that I had an appointment at the Cancer Center and her reaction was a little more tame than mine.
So, we go to the Cancer Center and wait in the waiting room with all these other people in various stages of cancer and I'm so nervous that I feel as if I could throw up at any moment. Finally, after what seemed like years, my name was called and my sister and I went back to a treatment room. The Nurse Practitioner started in about my platelet levels and told me that I'd be going back on steroids and I would meet with Dr. X tomorrow morning but for now they were sending me up to the Oncology floor. She had yet to tell me why I was being seen by an Oncologist or why I had to go to the Cancer Center. So I finally said "So is this ITP or something else... like you know... Cancer..." and she replied "Oh, God... It's ITP. I didn't realize you thought you had cancer. I guess coming to the Cancer Center and hearing words like Oncologists and Oncology would make you think that though..." YOU THINK?!?
So, I had to go to registration and register and then go up to Oncology. Now here comes the sobering part... I had to have an IVIG treatment, which takes about 8 hours. They put me in a room with three other people, all of which had some form of cancer and all were receiving chemotherapy. So, for 8 hours I had to sit in this room with my fellow patients and I realized that for them it isn't as simple as receiving two 8 hour treatments and going on steroids. For them, it's countless chemo treatments and everything that comes with that and the small hope that their cancer will go into remission and that some day there may be a cure. As I sat there humbled by their grace and strength and their perseverance I found myself at a loss for words. Conversations about chemo and nausea and hair falling out blended in with conversations about the best pizza in town and amazing new recipes and whirled around the room and I sat in stunned silence. Later that day they had to stop my treatment because I started having a reaction to it. Suddenly I was freezing and went pale and my lips turned blue. They brought me blankets and checked my oxygen level and stopped treatment and paged the Nurse Practitioner. From the corner of the room, and older gentleman spoke up and said "The young one is gonna be okay isn't she?" and he looked at me with genuine concern. This man who has advanced cancer is worried about me? The compassion he showed was awe inspiring and heartwarming. Several hours later when my treatment had finished he was still there receiving his chemotherapy and he smiled and waved at me and said "Maybe, God willing, I'll see you around again." I came back the next day for another treatment but he wasn't there. The room was empty when I first started but as the day went on people came and went for treatments such as iron and various drugs associated with treating blood related diseases. I was there for 8 hours and didn't leave until around 9 pm. When I left there was one older woman, a small fragile woman who had come in around 3 pm, who was still receiving a chemo treatment and infusion of something else. She smiled at me and said "God bless you on your journey" and closed her eyes as I walked out of the room.
Over the next year I went from bi-weekly to monthly to 6 month appointments with the Hematologist/Oncologist and his Nurse Practitioner. I would go to the Outpatient Lab 1 or 2 days before and get blood drawn and then I'd wait for the appointment and the news as to whether my platelet levels and white blood cell counts were normal. Every day I sat in the lobby of the Cancer Center and listened to the other patients talk about diagnosis and treatment and prognosis and life expectancy. I listened as they talked about nausea and loss of appetite and energy. I listened to them talk about fearing they wouldn't get to see their grandchilden or children grow up. I listened as some of them talked about being in remission and how they felt better than they had in a long time but feared with each appointment that they'd get that dreaded news that the cancer was back. Then one day the news did come for one of them, yes the cancer was back and it had spread. I tried not to be intrusive as they talked about fighting and being tired of the fight. I listened as they talked about how they weren't ready to say goodbye to their family. One day a young woman who couldn't have been much older than me came in for an appointment. When she came out to greet her nervous family the news not only brought tears to their eyes, but mine as well. Yes, she had cancer. It was in it's beginning stages but she needed to be hospitalized immediately for exploratory surgery, more testing to make sure it hadn't spread to other organs and starting treatment. My heart was racing and tears were streaming and I finally got up and moved away to give them more privacy. I felt as if I were intruding on one of the most defining and life-changing moments this family would ever have. The mother caught my eye as I moved away and smiled a weak smile and nodded in thanks and understanding. But I barely managed to return it as I sat down and waited nervously for my appointment. It occurred to me that whatever news the doctor had for me couldn't possibly be as life-changing or devastating as the news that young woman just received. For me a relapse meant more IVIG treatments and steroids. It wasn't a death sentence it was just a set-back, but what about those patients who hear the word "cancer" at their appointments? It was all very sobering.
I had an appointment with the Hematologist/Oncologist last Wednesday (April 18, 2012) and he gave me the news I had wanted to hear. I have been symptom free and in "remission" from ITP for 1 year and 29 days. My next appointment isn't until April of next year, unless I have symptoms and then I have to make an appointment immediately. But for now, I'm in the clear and there's a possibility and hope that is unique and different than most of the other patients, that it might not come back at all. As I walked out of the Cancer Center that day with a smile on my face I was reminded of my experiences over the last year and 29 days. I was reminded of my personal connection with cancer and how much I despised the disease.
My grandmother passed away on January 19, 1994 from cancer. She'd been ill on and off for as long as I could remember. She always seemed to beat it and come back though and she was a symbol of courage and strength for me and my family. Finally, in her final stages of cancer, she opted to come home instead of going to a hospice because she wanted to die at home. My family took care of her in her final days. I remember the final year of my grandmother's life and how she slowly slipped away. I remember how the disease slowly robbed her of everything she had and left her a small and scared little old woman dying. For me cancer is personal and with my latest illness and treatment at the Cancer Center came the reminder that life is precious. We must live every day with the knowledge that it could very well be our last. So, let the people you love know you love and appreciate them. Never take anything or anyone for granted. Take every opportunity to enjoy this beautiful struggle and journey we call life...
Live well. Laugh often. Love more.
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