It's been an incredibly challenging month. Back in early April, I had a bit stronger dose of chemo to prepare for my ten-day trip to the East Coast and the very next day, I started having difficulties breathing. I"m still having difficulties breathing and it's been determined that the childhood asthma that hasn't made an appearance in my life since I was 12-years-old has made a reappearance. Sigh, cough, cough.
I could handle asthma if it had stopped with that. But no, stomach issues settled in as well. I've had trouble eating and I struggled with keeping food down on my trip. I ran random fevers. I coughed way more than I wanted to. I vomited more frequently than anyone would be comfortable.
I returned and had scans my first day back. They were encouraging ... nothing in my lungs and my liver seemed to be improving. However, my blood work said the opposite. My liver function tests (LFT) rose to alarming heights and I continued to have stomach issues. More blood work continued to show alarming trends in the LFTs. My appointment last week ended with my oncologist saying, "I'm worried about you."
Two days after that appointment found me in the emergency room after waking up at 4:00 a.m. doubled over in pain. Nothing I had experienced the previous few weeks could compare to that pain and I knew something was seriously wrong. A doctor friend helped me decide to go in and she contacted the emergency room doctor (another friend) to get his opinion as well. He was scheduled to work that day and told us he would meet us there.
A few hours later it was determined that I had a partial bowel obstruction. I was given a few meds to help clear my system out; a soft diet to follow and the ongoing request to rest. That's an easy one because after a month of feeling poorly, I get quite tired.
The good news is that as of today, I'm feeling much better. I ate real food today without having any pain at all. Only the breathlessness and coughing remains. Additionally, I had blood work done and my LFTs are dropping! What the heck? Did the bowel obstruction cause them to rise? Or, did the fact that I had gone three weeks without chemo cause them to rise? We may never know.
In the meantime, my friend, Jennifer died of this disease last week and my friend, Helen, has made the decision to stop treatments. I spoke to Helen's husband today and I was appalled at the words that came out of my mouth:
"How are you doing?"
I recognized immediately that even those of us who live with this horror every day can slip into what can be considered cliches, but to give myself a bit of credit ... I was genuinely interested in how he was doing. I followed up my words with a very straightforward, "Tom, what a stupid thing to say. I know how you are doing, but at the same time, I don't know how you, as a beloved husband and as my friend, are doing."
Tom, the gracious man he is, set me at ease, saying, "Of course, I understand what you mean. You're allowed to say such things to me because you know there is absolutely nothing good about this situation. Helen's cousins are visiting and I'm on my way to the gym." That answered my immediate question regarding concern for him as the caregiver.
I ache all over at the thought of Helen leaving us. Diagnosed Stage IV de novo in September 2012, we were hoping for many more years. We simply can't take things for granted.
My husband and I are trying to plan a family vacation for the four of us and it's no longer a simple matter of picking a week and making plans. We have to plan around scan schedules, chemo schedules and choose locations that are easy to get medical care, if necessary. Accommodating job schedules, the end of school, the beginning of school, etc., means a juggling act to make it happen.
So this is a simple, everyday kind of post. Living with disease, suffering with illnesses that may or may not be related to disease, losing one friend while preparing for the loss of another friend and more living with disease. I guess I wouldn't have it any other way, but given the choice, I think there are a few things about my life that I would change.
I could handle asthma if it had stopped with that. But no, stomach issues settled in as well. I've had trouble eating and I struggled with keeping food down on my trip. I ran random fevers. I coughed way more than I wanted to. I vomited more frequently than anyone would be comfortable.
I returned and had scans my first day back. They were encouraging ... nothing in my lungs and my liver seemed to be improving. However, my blood work said the opposite. My liver function tests (LFT) rose to alarming heights and I continued to have stomach issues. More blood work continued to show alarming trends in the LFTs. My appointment last week ended with my oncologist saying, "I'm worried about you."
Two days after that appointment found me in the emergency room after waking up at 4:00 a.m. doubled over in pain. Nothing I had experienced the previous few weeks could compare to that pain and I knew something was seriously wrong. A doctor friend helped me decide to go in and she contacted the emergency room doctor (another friend) to get his opinion as well. He was scheduled to work that day and told us he would meet us there.
A few hours later it was determined that I had a partial bowel obstruction. I was given a few meds to help clear my system out; a soft diet to follow and the ongoing request to rest. That's an easy one because after a month of feeling poorly, I get quite tired.
The good news is that as of today, I'm feeling much better. I ate real food today without having any pain at all. Only the breathlessness and coughing remains. Additionally, I had blood work done and my LFTs are dropping! What the heck? Did the bowel obstruction cause them to rise? Or, did the fact that I had gone three weeks without chemo cause them to rise? We may never know.
In the meantime, my friend, Jennifer died of this disease last week and my friend, Helen, has made the decision to stop treatments. I spoke to Helen's husband today and I was appalled at the words that came out of my mouth:
"How are you doing?"
I recognized immediately that even those of us who live with this horror every day can slip into what can be considered cliches, but to give myself a bit of credit ... I was genuinely interested in how he was doing. I followed up my words with a very straightforward, "Tom, what a stupid thing to say. I know how you are doing, but at the same time, I don't know how you, as a beloved husband and as my friend, are doing."
Tom, the gracious man he is, set me at ease, saying, "Of course, I understand what you mean. You're allowed to say such things to me because you know there is absolutely nothing good about this situation. Helen's cousins are visiting and I'm on my way to the gym." That answered my immediate question regarding concern for him as the caregiver.
I ache all over at the thought of Helen leaving us. Diagnosed Stage IV de novo in September 2012, we were hoping for many more years. We simply can't take things for granted.
My husband and I are trying to plan a family vacation for the four of us and it's no longer a simple matter of picking a week and making plans. We have to plan around scan schedules, chemo schedules and choose locations that are easy to get medical care, if necessary. Accommodating job schedules, the end of school, the beginning of school, etc., means a juggling act to make it happen.
So this is a simple, everyday kind of post. Living with disease, suffering with illnesses that may or may not be related to disease, losing one friend while preparing for the loss of another friend and more living with disease. I guess I wouldn't have it any other way, but given the choice, I think there are a few things about my life that I would change.
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