When I first learned my breast cells were on a path to destroy me, thoughts of living to see tomorrow were bleak. I scrambled to purge and pack my belongings so my husband wouldn’t have to deal with them after I died. I worked on completing projects that I had been putting off finishing until life slowed down. Staying home was a choice because I was preparing to die. Leaving home to have fun, I thought, would be wasting my limited time, hours lost that I couldn't get back.
Amazingly, here I am five years after my first treatment (May 6th, 2013) for stage IV breast cancer. The thought I might die tomorrow still enters my mind at times, but my thinking has became more optimistic. As time moved along, I began thinking I will be alive tomorrow. In fact, on days when I am feeling well I believe I will see tomorrow, and the day after, and the day after that. I have even entertained the thought I will be sitting at this same desk, in this same chair, writing about my 6th year of treatment for my disease.
Over these five years I have allowed myself to relax and not think so much about dying. Staying busy has helped since it keeps me focused on other aspects of my life. Watching a television show that really adds nothing to my life except some laughter or some information about the world used to feel like I was throwing away my limited time. Now, I can watch because I have given myself permission to recuperate from work and the stresses of daily living.
I am certain I am feeling this way because I am tolerating the treatments, my cancer is quiet, and my quality of life is allowing me to live almost as if there is nothing wrong with me. Perhaps and most likely, the biggest reason I am able to relax more today than five years ago is because my most important work is nearly finished. My youngest daughter who was 10 when I was diagnosed stage IV is now 15. A lot of relief goes with that.
Three weeks ago, though, reality slapped me hard in the face reminding me I am physically fragile. It reminded me that my rejecting the thought I could die tomorrow—or today—is fantasy. My “not dying today” mantra that I happily tell myself is in fact a lie.
On that Sunday, I arrived at my treatment center for TDM-1 (Kadcyla #67) hoping for an event free appointment. I didn’t want to be denied treatment like I was at my last scheduled treatment. My platelets and absolute neutrophils were low. The platelets were 68,000 in 1 cubic millimeter (normal between 140 and 440,000) which is low but not so low I cannot receive treatment. But, in combination with my absolute neutrophils at 1.7 (normal range is 2.0-7.5), I was refused treatment. That day, I returned to my car and drove those 2 hours and 15 minutes home in disappointment. Thankfully on this treatment day, my platelets and absolute neutrophils were back in a good range. But, something else was amiss.
“Are you noticing any dizziness, lightheadedness, or shaking? What have you eaten today?”
“No, I feel okay. I ate a banana and drank coffee on my drive here.”
“Your glucose level is a 37.”
“What is it supposed to be?”
“Above 70.”
“Oh.”
“The on-call doctor has spoken to your oncologist and the decision was made that you can be treated, but you can’t go home today. That glucose level is dangerous, and we can’t let you drive.”
At that moment, I felt afraid. I thought I could die . . . today.
Would I get to go home, ever? I am not prepared. It wasn’t supposed to end this way.”
A team of detectives, endocrinologists, were assigned to my case.
From Sunday afternoon to Wednesday evening, I sat in a hospital room waiting to find out what might be wrong. Blood tests were done to see if my adrenal glands were producing the correct amount of cortisol that works to control blood sugar levels. (Cancer can metastasize anywhere, so there was concern that my adrenal glands could be diseased. A CAT scan was done to look for metastases in my abdomen and pelvis—it was clear!) Another adrenal produced hormone, AC, was checked, too—it was a little low. With the AC hormone level low, I panicked a little. A tumor in my brain could be the reason my glucose had dropped so low. Since I am a stage IV patient, the doctors were concerned about the possibility of a tumor(s) inhibiting the function of the hypothalamus and pituitary gland that signal the adrenal glands to release its hormones. Scanning my brain was not ordered, though. The doctors wanted to do another test first.
The next test would determine if my pancreas was working and that I didn’t have a rare condition of non-diabetic hypoglycemia. I was told I could drink water but eat no food until testing was stopped. The fasting could last as long as 72 hours. In the end, luckily, I was allowed to stop at 57 hours. Yep, you read that right—57 hours with nothing to eat—a record for me. On the third day, I was feeling not as hungry and had some energy I was not expecting. Turns out, my pancreas works! And, my liver did its job too as it responded to my starvation—gotta love those ketones giving my body some needed energy. My glucose levels rose and remained in the high 70’s. My adrenal hormone that was low will be checked again at a later appointment. For now, concerns about any brain tumors have been put aside.
Being in the hospital—the first since my diagnosis—reminded me that my fantasy of many tomorrows is just that . . . a fantasy. The only certainty I have—that anyone has—of being alive at any given point in time is the one being lived at this moment.
Each moment I have lived that has turned into five years of many moments has been wonderful. I feel so lucky to have lived each one. As soon as the fear and worry of my dying on that day subsided while I sat in that hospital bed, I returned to thinking I will be alive today and tomorrow because that is what I want to believe. I want the carefree bliss of imagining the next five years of many moments, still writing, still enjoying living. It may not happen, but for now, I am going to keep believing it will even if it is statistically and probably a lie.
Amazingly, here I am five years after my first treatment (May 6th, 2013) for stage IV breast cancer. The thought I might die tomorrow still enters my mind at times, but my thinking has became more optimistic. As time moved along, I began thinking I will be alive tomorrow. In fact, on days when I am feeling well I believe I will see tomorrow, and the day after, and the day after that. I have even entertained the thought I will be sitting at this same desk, in this same chair, writing about my 6th year of treatment for my disease.
Over these five years I have allowed myself to relax and not think so much about dying. Staying busy has helped since it keeps me focused on other aspects of my life. Watching a television show that really adds nothing to my life except some laughter or some information about the world used to feel like I was throwing away my limited time. Now, I can watch because I have given myself permission to recuperate from work and the stresses of daily living.
I am certain I am feeling this way because I am tolerating the treatments, my cancer is quiet, and my quality of life is allowing me to live almost as if there is nothing wrong with me. Perhaps and most likely, the biggest reason I am able to relax more today than five years ago is because my most important work is nearly finished. My youngest daughter who was 10 when I was diagnosed stage IV is now 15. A lot of relief goes with that.
Three weeks ago, though, reality slapped me hard in the face reminding me I am physically fragile. It reminded me that my rejecting the thought I could die tomorrow—or today—is fantasy. My “not dying today” mantra that I happily tell myself is in fact a lie.
On that Sunday, I arrived at my treatment center for TDM-1 (Kadcyla #67) hoping for an event free appointment. I didn’t want to be denied treatment like I was at my last scheduled treatment. My platelets and absolute neutrophils were low. The platelets were 68,000 in 1 cubic millimeter (normal between 140 and 440,000) which is low but not so low I cannot receive treatment. But, in combination with my absolute neutrophils at 1.7 (normal range is 2.0-7.5), I was refused treatment. That day, I returned to my car and drove those 2 hours and 15 minutes home in disappointment. Thankfully on this treatment day, my platelets and absolute neutrophils were back in a good range. But, something else was amiss.
“Are you noticing any dizziness, lightheadedness, or shaking? What have you eaten today?”
“No, I feel okay. I ate a banana and drank coffee on my drive here.”
“Your glucose level is a 37.”
“What is it supposed to be?”
“Above 70.”
“Oh.”
“The on-call doctor has spoken to your oncologist and the decision was made that you can be treated, but you can’t go home today. That glucose level is dangerous, and we can’t let you drive.”
At that moment, I felt afraid. I thought I could die . . . today.
Would I get to go home, ever? I am not prepared. It wasn’t supposed to end this way.”
A team of detectives, endocrinologists, were assigned to my case.
From Sunday afternoon to Wednesday evening, I sat in a hospital room waiting to find out what might be wrong. Blood tests were done to see if my adrenal glands were producing the correct amount of cortisol that works to control blood sugar levels. (Cancer can metastasize anywhere, so there was concern that my adrenal glands could be diseased. A CAT scan was done to look for metastases in my abdomen and pelvis—it was clear!) Another adrenal produced hormone, AC, was checked, too—it was a little low. With the AC hormone level low, I panicked a little. A tumor in my brain could be the reason my glucose had dropped so low. Since I am a stage IV patient, the doctors were concerned about the possibility of a tumor(s) inhibiting the function of the hypothalamus and pituitary gland that signal the adrenal glands to release its hormones. Scanning my brain was not ordered, though. The doctors wanted to do another test first.
The next test would determine if my pancreas was working and that I didn’t have a rare condition of non-diabetic hypoglycemia. I was told I could drink water but eat no food until testing was stopped. The fasting could last as long as 72 hours. In the end, luckily, I was allowed to stop at 57 hours. Yep, you read that right—57 hours with nothing to eat—a record for me. On the third day, I was feeling not as hungry and had some energy I was not expecting. Turns out, my pancreas works! And, my liver did its job too as it responded to my starvation—gotta love those ketones giving my body some needed energy. My glucose levels rose and remained in the high 70’s. My adrenal hormone that was low will be checked again at a later appointment. For now, concerns about any brain tumors have been put aside.
Being in the hospital—the first since my diagnosis—reminded me that my fantasy of many tomorrows is just that . . . a fantasy. The only certainty I have—that anyone has—of being alive at any given point in time is the one being lived at this moment.
Each moment I have lived that has turned into five years of many moments has been wonderful. I feel so lucky to have lived each one. As soon as the fear and worry of my dying on that day subsided while I sat in that hospital bed, I returned to thinking I will be alive today and tomorrow because that is what I want to believe. I want the carefree bliss of imagining the next five years of many moments, still writing, still enjoying living. It may not happen, but for now, I am going to keep believing it will even if it is statistically and probably a lie.
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ReplyDeleteWow that was really a great read indeed. Expecting more such blogs in near future. Thanks for sharing.
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