I can assume I had it coming. Maybe I was due. Maybe I had taken for granted that I felt okay considering everything. Maybe it was just a fluke. Either way, it was here, and it was terrible.
Wednesday, February 19th:
I had optimistically high hopes. Hope that I would hear more about the possible PET scan. Hope that my blood would finally be back to normal. Hope that we could get through with the session and still feel as well as I had been. Hope that things were going to continue getting back to normal.
Things did not go as hoped.
As a creature of habit, I was quite put off to see the that the chair I normally frequented when I attended chemo was occupied. My frustration led me to a part of the room I didn't want to be in and was not comfortable in. Life's full of disappointments.
My new position in the room brought on a different nurse to assist me in the chemo procedure for the day. She talked very fast. Ran through the procedures very fast. And seemed extremely rushed and overwhelmed by the amount of people in for some sort of procedure. Her anxiety did not help mine. Nothing about the chemo treatment gave me a good feeling.
Fast forward one hour.
I laid on the couch with a half eaten sandwich, clutching at my stomach. I felt queasy and began to hurt all over. I writhed in pain for almost ten minutes before I could muster up the courage to make a run for the anti-nausea medication and pain killers. I stood up, choked down the pills, and ran for bed.
In bed, I hurt. All over now, the pain seemed to shoot through my body. My stomach tossed and turned making a variety of unpleasant sounds. Then the chills started. Much like the night of my first chemo treatment. They shot through me like lightening. It was violent and painful. Deep into my hip bones and thighs. It took thirty minutes, eight blankets, and my wife's body heat to make them stop.
Then I slept.
The next few days were more of the same. I had a general feeling of rottenness. Headaches, body pain, and stomach issues. They were extremely awful and made me reevaluate everything I had thought and said about the process so far. I don't know if I can keep doing this.
I had stomach issues for just over a week. Basically everything on the side of a pepto-bismol bottle, was the current range of symptoms I was experiencing. My doctors office was worried that I might need to come in for fluids to make up for everything I had lost and continued to lose. But, rather than experience the chemo room again, I forced myself full of fluids.
I really can't describe those eight or nine days. You already feel terrible, then tack on the loss of fluids, the loss of appetite and an empty stomach, well everything seems to become magnified.
I'm sure that I wasn't the most pleasant person to be around during that time. I'm sure I was a bit moody and more than a bit temperamental. But cut me some slack, I'm fighting cancer.
To add to my general displeasure, my insurance company decided that a PET scan was not a necessary procedure at this time. And that if I wanted it, then it would be three thousand dollars out of my pocket. So I didn't get the PET scan.
Their reasoning was that I seemed to be responding well to the treatment. And tif i am responding well to the drugs, then why do we need to run the test?
This level of stupidity cannot be tolerated.
Again, the PET scan tells me what the cancer looks like. Without it we do not know if the drugs are working.
Hmm... you have five minutes to pull the red wire to defuse the bomb. However, you do not get to see the bomb. Go!
How is this not necessary? Well, better luck next time I guess. We'll see if they think it's necessary next week when we try again. And then again, and again, again, until they (hopefully) finally okay the PET Scan.
If I am looking for a silver lining, I guess it was one less procedure I had to go through that week.
On Monday, February 24th, I had a pulmonary exam. This is to check to make sure the blyomycin isn't destroying my lungs. Obviously this test requires a lot of breathing, and energy. Perfect, considering that not eating and passing everything you might have in your system out quickly leaves you with very little extra energy for blowing into a machine for an hour.
The experience was made even better after having to sit and wait for an extra hour for the procedure to start. I guess it could have been worse.
The worse: My port has been bothering me since my second treatment. When I brought it up to Spivey, he recommended that I go in for a port study. In this procedure, they simply access my port just like they do for chemo and pump me full of an ink substance to monitor on the screen. On the screen they can watch the ink and tell whether there is a leak in the port that might be causing me pain. The procedure takes fifteen minutes. I was there for three hours.
On Wednesday, February 26th, I waited in the surgery prep room for two hours. SURGERY PREP. Apparently, no one at this hospital has any idea what a port study is.
Then the procedure itself drug on thanks to the nurses running my case having no idea what they were doing. Apparently, they had never done a port study before. The doctor tried to walk them through everything step by step, only to take over himself after seeing that this was getting them nowhere. Three nurses in the room and none of them had done this before.
After everything, both results came back looking good. My lung function was fine and my port was not leaking. My discomfort and pain was probably due to an irritated nerve close to the port and I "will just get use to it" and "it will go away eventually".
Here's hoping.
I start my third round of chemo (fifth treatment overall) tomorrow without any idea of whether or not it is working. I am nervous that my blood levels haven't gone up, since they have been seemingly stuck at 12.5 for two weeks, And of course, I am extremely nervous that all of these nasty side effects will come back all vicious and terrifying just as before.
I am scared and nervous as all hell. But I still hope.
I hope that the side effects were a fluke. Hope that my blood has gone up. Hope that everything is working and that we are winning.
It's all you can do. Day after day. Week after week. Just grin and bare it and hope that all of this isn't for nothing. That there is a light at the end and every terrible minutes that passes is realistically getting you closer to it. And maybe more importantly, that the light is somewhere that you actually want to be going. So you hope.
When the world whispers "give up." Hope whispers "try it one more time."
I know we can find inspiration and motivation in the strangest of places. But I find it appropriate where I found this latest one. Going into this next treatment, I need it.
I think I know what shirt I will be wearing to treatment tomorrow.
It says "Hope" on it.
Wish me luck.
#StrongerThanCancer
My Give Forward Fund.
Wednesday, February 19th:
I had optimistically high hopes. Hope that I would hear more about the possible PET scan. Hope that my blood would finally be back to normal. Hope that we could get through with the session and still feel as well as I had been. Hope that things were going to continue getting back to normal.
Things did not go as hoped.
As a creature of habit, I was quite put off to see the that the chair I normally frequented when I attended chemo was occupied. My frustration led me to a part of the room I didn't want to be in and was not comfortable in. Life's full of disappointments.
My new position in the room brought on a different nurse to assist me in the chemo procedure for the day. She talked very fast. Ran through the procedures very fast. And seemed extremely rushed and overwhelmed by the amount of people in for some sort of procedure. Her anxiety did not help mine. Nothing about the chemo treatment gave me a good feeling.
Fast forward one hour.
I laid on the couch with a half eaten sandwich, clutching at my stomach. I felt queasy and began to hurt all over. I writhed in pain for almost ten minutes before I could muster up the courage to make a run for the anti-nausea medication and pain killers. I stood up, choked down the pills, and ran for bed.
In bed, I hurt. All over now, the pain seemed to shoot through my body. My stomach tossed and turned making a variety of unpleasant sounds. Then the chills started. Much like the night of my first chemo treatment. They shot through me like lightening. It was violent and painful. Deep into my hip bones and thighs. It took thirty minutes, eight blankets, and my wife's body heat to make them stop.
Then I slept.
The next few days were more of the same. I had a general feeling of rottenness. Headaches, body pain, and stomach issues. They were extremely awful and made me reevaluate everything I had thought and said about the process so far. I don't know if I can keep doing this.
I had stomach issues for just over a week. Basically everything on the side of a pepto-bismol bottle, was the current range of symptoms I was experiencing. My doctors office was worried that I might need to come in for fluids to make up for everything I had lost and continued to lose. But, rather than experience the chemo room again, I forced myself full of fluids.
I really can't describe those eight or nine days. You already feel terrible, then tack on the loss of fluids, the loss of appetite and an empty stomach, well everything seems to become magnified.
I'm sure that I wasn't the most pleasant person to be around during that time. I'm sure I was a bit moody and more than a bit temperamental. But cut me some slack, I'm fighting cancer.
To add to my general displeasure, my insurance company decided that a PET scan was not a necessary procedure at this time. And that if I wanted it, then it would be three thousand dollars out of my pocket. So I didn't get the PET scan.
Their reasoning was that I seemed to be responding well to the treatment. And tif i am responding well to the drugs, then why do we need to run the test?
This level of stupidity cannot be tolerated.
Again, the PET scan tells me what the cancer looks like. Without it we do not know if the drugs are working.
Hmm... you have five minutes to pull the red wire to defuse the bomb. However, you do not get to see the bomb. Go!
How is this not necessary? Well, better luck next time I guess. We'll see if they think it's necessary next week when we try again. And then again, and again, again, until they (hopefully) finally okay the PET Scan.
If I am looking for a silver lining, I guess it was one less procedure I had to go through that week.
On Monday, February 24th, I had a pulmonary exam. This is to check to make sure the blyomycin isn't destroying my lungs. Obviously this test requires a lot of breathing, and energy. Perfect, considering that not eating and passing everything you might have in your system out quickly leaves you with very little extra energy for blowing into a machine for an hour.
The experience was made even better after having to sit and wait for an extra hour for the procedure to start. I guess it could have been worse.
The worse: My port has been bothering me since my second treatment. When I brought it up to Spivey, he recommended that I go in for a port study. In this procedure, they simply access my port just like they do for chemo and pump me full of an ink substance to monitor on the screen. On the screen they can watch the ink and tell whether there is a leak in the port that might be causing me pain. The procedure takes fifteen minutes. I was there for three hours.
On Wednesday, February 26th, I waited in the surgery prep room for two hours. SURGERY PREP. Apparently, no one at this hospital has any idea what a port study is.
Then the procedure itself drug on thanks to the nurses running my case having no idea what they were doing. Apparently, they had never done a port study before. The doctor tried to walk them through everything step by step, only to take over himself after seeing that this was getting them nowhere. Three nurses in the room and none of them had done this before.
After everything, both results came back looking good. My lung function was fine and my port was not leaking. My discomfort and pain was probably due to an irritated nerve close to the port and I "will just get use to it" and "it will go away eventually".
Here's hoping.
I start my third round of chemo (fifth treatment overall) tomorrow without any idea of whether or not it is working. I am nervous that my blood levels haven't gone up, since they have been seemingly stuck at 12.5 for two weeks, And of course, I am extremely nervous that all of these nasty side effects will come back all vicious and terrifying just as before.
I am scared and nervous as all hell. But I still hope.
I hope that the side effects were a fluke. Hope that my blood has gone up. Hope that everything is working and that we are winning.
It's all you can do. Day after day. Week after week. Just grin and bare it and hope that all of this isn't for nothing. That there is a light at the end and every terrible minutes that passes is realistically getting you closer to it. And maybe more importantly, that the light is somewhere that you actually want to be going. So you hope.
When the world whispers "give up." Hope whispers "try it one more time."
I know we can find inspiration and motivation in the strangest of places. But I find it appropriate where I found this latest one. Going into this next treatment, I need it.
I think I know what shirt I will be wearing to treatment tomorrow.
It says "Hope" on it.
Wish me luck.
#StrongerThanCancer
My Give Forward Fund.
iloveyoubaby
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