Monday, April 23, 2012

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.

Wednesday, April 18, 2012

Sobering - Background Information (Part 1)

In September of 2007 I was diagnosed with Idiopathic Thrombocytopenic Purpura (ITP), which is a blood disorder in which your immune system attacks and destroys the platelets in your body. Platelets are necessary for clotting, so symptoms of ITP include bruising easily or bruises without obvious cause or injury, bleeding of the mouth and gums, nosebleeds, petechial skin rashes (red or purple dots), and in severe cases internal bleeding and bleeding in the brain. A normal platelet count is 150,000 to 450,000 platelets per microlitre of blood. It is not known what causes ITP, hence the word "idiopathic". Although a suspected reoccurring virus might be the culprit in my case. My platelet count was 3000 and the ER doctor who admitted me said that I could have easily bled to death from something as simple as a scrape from falling down or a paper cut. I was admitted because they wanted to do an infusion of platelets, intravenous immunoglobulin treatments, and make sure I wasn't bleeding internally. I was hospitalized for 4 days and upon release I was on 150 mgs of Prednisone (steroid) and referred to my primary care doctor for follow-up care and monitoring. I had to get blood work done weekly at first and then eventually monthly while they slowly reduced my Prednisone by 10 mg a month. The entire process took over a year before I was finally off of Prednisone and all my care was handled by my primary doctor.

In March of 2011 I experienced a relapse and started developing the petechial skin rash and one morning I woke up with unexplained bruises all over my stomach. I immediately freaked out. We're talking major panic attack that involved getting sick. I tried to call my sister Brenda several times and couldn't get through. Then I heard a knock on the door and when I opened it she was there. She could tell by the look on my face that something was wrong. When I showed her the bruises she told me I needed to call my doctor immediately. I called my primary care doctor who saw me later that day and he ordered several lab tests that I had done at an outside lab facility. My sister Brenda drove me to both appointments and then drove me home and stayed with me a few hours before going home. Later that evening he called me to inform me that my platelet count was 9000 and that he was referring me to the same Hematologist that managed my care while I was in the hospital. His reasoning was that he thought I would be better served by an expert in the field because his knowledge of treatment was limited and he wanted to make sure there were no complications with my care. He also told me that if I were his daughter then he'd definitely insist that I saw a specialist. Well, that's comforting... He told me that I should call his office in the morning and they would contact the Hematologist and make sure all the labs were sent to him and then his office would contact me to schedule an appointment. Sounded simple enough. I was terrified, but I had been through this before so I had some idea of what to expect. Or at least that's what I thought...

To be continued...

Sunday, April 15, 2012

No Apologies... No Excuses...

Well, as you can see the idea I had about blogging at least once every day was a epic fail. It's all good. Life tends to get in the way sometimes. So, I'm not making any apologies and excuses but I am also not making any promises. I'll blog when I can... That might be every day or it might be a few days a week or it could be a few times a month. But I'll eventually blog. I can't promise intellectual stimulating conversation either. Some of the blog entries might not even make sense. But hey, it's always your choice to read or not to read... 

So anyway... I'm working up a longer entry for later. Peace out until then!

Tuesday, April 10, 2012

Epic Fail

So, I suppose since the last entry to this blog was on April 4th and it's now April 10th we can safely say that posting in my blog every day was an epic fail. Oh well...

There is something rather huge that I could blog about but I'm not sure I am ready to blog and share that just yet. I know, I'm such a tease... It's nothing bad though. It's just life-changing, perhaps in a good way, for our family.

Moving on...

Someone suggested the other day that I pick a current event or article from our newspaper or any newspaper and do a commentary every day. I am still considering this idea. On the surface it seems like a good idea. But, I am not sure if I am politically correct enough to comment on such things... I have a lot of opinions that might not be shared by everyone...  We shall see...

Until next time my dears...

Wednesday, April 04, 2012

For Blog's Sake

I've decided to try posting to my blog at least once every day. Some of my posts might be short and sweet. There may be some days where I post several short entries and other days when I post a longer blog at the end of the day. There may be some days when I post a quote, poem, or song lyrics that have inspired me or touched me in some way. I hope to post something new every day unless I simply have nothing to say, which isn't often.

Enjoy the ride...