We were done. We were clear. We had started to put it behind us.
We had a party. We sang. We laughed. We took pictures and painted our faces, and ate pink popcorn.
We went camping. We went swimming. We went hiking. We began to retake our lives.
And then... And then it happened. Just a scan to check things out, make sure we were still good.
But why, Dad? Why do I need the IV? Can't we wait 6 months for the scan? Please?
We need to do it, sweetie. What if it comes back? Wouldn't you want to know sooner? So we can get rid of it?
...
Dad, you were right. I'm glad you made me do the scan.
Back in the hospital Back on the chemo. Back to juggling life and disease, trying to fight a dual battle and doing poorly at both.
Back to updates, well wishes and offers of help. Back to dodging and evading your own thoughts about what if... What if it doesn't work?
But there's no time to be sad or bathe in self pity. Forge on. Keep going. Prepare for the next battle.
But sometimes, you just need to sit. Sit quietly, like Ferdinand, and smell the flowers. And cry.
Just a little.
Wednesday, July 30, 2014
Air In Line
This may come across incredibly selfish, but I want to say - I HATE IV pumps, and in particular, the "Air in Line" error.
Used to be, an IV was a hanging bag, with gravity working against an adjustable clamp to set the flow rate. These days we have an IV pump, which regulates flow rate.
I truly believe this thing was developed and marketed by Satan himself. I've been going over it, looking for an address, expecting to see Hell (plus curious what the zip code is there...)
These things work almost flawlessly during the day. But come nightfall, things change. It may detect when the people in the room have drifted off to forced and uneasy sleep, and then it's on.
Every 30-45 minutes, throughout the night, and alarm begins to ring, showing a message of "air in line" on the screen. The alarm is loud enough to wake those in the room, but not loud enough to make it through the door and out to the nurses station where the nurses are sitting charting/chatting on night shift.
So, up I get, to go get the nurse. When she comes in, she pulls the line, taps it, puts it back and restarts the pump. All seems well then. She leaves, I lay back down, and off to sleep again.
Then, it repeats.
And repeats.
And repeats.
Every once in a while I instead hit the nurse call button, but inevitably the medical assistant is not at the desk, and the call goes unanswered. So, then I call the nurse's phone, and undoubtedly she'll be sterile in another room, so the call goes unanswered.
You can silence the alarm, for 60 seconds. Then it's back.
You can also ignore it. This is a bad idea. If ignored for 5 minutes, the volume jumps to a level that the patients next door begin to come out in the hall, thinking the building is in fire.
What's the worst part? Harper sleeps right through it. So, I get all the enjoyment to myself.
So, selfish post. In summary, I hate IV pumps.
Once I get back home, I'm sure I'll have nightmares about the words:
Air In Line
Used to be, an IV was a hanging bag, with gravity working against an adjustable clamp to set the flow rate. These days we have an IV pump, which regulates flow rate.
I truly believe this thing was developed and marketed by Satan himself. I've been going over it, looking for an address, expecting to see Hell (plus curious what the zip code is there...)
These things work almost flawlessly during the day. But come nightfall, things change. It may detect when the people in the room have drifted off to forced and uneasy sleep, and then it's on.
Every 30-45 minutes, throughout the night, and alarm begins to ring, showing a message of "air in line" on the screen. The alarm is loud enough to wake those in the room, but not loud enough to make it through the door and out to the nurses station where the nurses are sitting charting/chatting on night shift.
So, up I get, to go get the nurse. When she comes in, she pulls the line, taps it, puts it back and restarts the pump. All seems well then. She leaves, I lay back down, and off to sleep again.
Then, it repeats.
And repeats.
And repeats.
Every once in a while I instead hit the nurse call button, but inevitably the medical assistant is not at the desk, and the call goes unanswered. So, then I call the nurse's phone, and undoubtedly she'll be sterile in another room, so the call goes unanswered.
You can silence the alarm, for 60 seconds. Then it's back.
You can also ignore it. This is a bad idea. If ignored for 5 minutes, the volume jumps to a level that the patients next door begin to come out in the hall, thinking the building is in fire.
What's the worst part? Harper sleeps right through it. So, I get all the enjoyment to myself.
So, selfish post. In summary, I hate IV pumps.
Once I get back home, I'm sure I'll have nightmares about the words:
Air In Line
Monday, July 28, 2014
Second Verse
The scenery is familiar. Many faces we recognize. Many people recognize us.
We showed up in our coordinated "Hope For Harper" t-shirts, and sat relatively calmly in the surgical family waiting room full of "first timers". We've been here before. Not our first rodeo.
The surgery took the hour predicted, and the surgeon called us in to tell us everything went well. As Harper was in recovery, we visited our "favorite" (only) restaurant in Kosair - McDonalds - for some breakfast.
We knew she'd be delivered to 7 West, so we went to meet her. The floor is only a little more than half full, so it's quiet as we arrive. They recognize us (sad), and show us to Harper's room. It's one we haven't been in before (there aren't that many left that we haven't yet frequented). We sit, and wait.
We wait for The Hulk. See, Harper doesn't wake well from anesthesia. She transforms from sweet adorable Harper to angry scary Harper, and she'll stay that way for a few hours, before an internal switch flips, and the Harper we love re-appears.
The Hulk did not disappoint. Once she arrived and awoke, it was on. The nurse needed to hook fluids to her Broviak. She said no. She smacked at the nurses hand. She screamed blood-curdling screams that I'm confident we're heard by the entire floor. She grabbed, she cried, she wriggled and writhed. Melissa and I plus 2 nurses held her down to get the lines hooked up.
She accused the nurse, the doctors and the hospital of trying to kill her. She wanted the line out. She wanted the IV pump off. She begged me to lock the door. When I explained there are no locks, she demanded I bar it to keep them out. When all that failed, she asserted we were trying to kill her too, and that the medicine/fluids were poison.
This is all a perverse reverse of what happened when her line came out last time. Then she begged for it to be put back in, and even offered up her arm for a peripheral IV.
After a dose of fentanyl and lorazepam, she's back asleep - hopefully allowing the hulk-ifying anesthesia to wear off so she can be a little bit more her normal crazy self and not the demon-possessed child she just demonstrated.
But, we've been down this road, so we know a little of what to expect. Despite despising that we are here, it is oddly slightly reassuring to be in familiar surroundings.
Much of what we expect should be very similar to our experience before. More of the same, just stronger.
Second verse, just like the first. A little bit louder, and a little bit worse.
We showed up in our coordinated "Hope For Harper" t-shirts, and sat relatively calmly in the surgical family waiting room full of "first timers". We've been here before. Not our first rodeo.
The surgery took the hour predicted, and the surgeon called us in to tell us everything went well. As Harper was in recovery, we visited our "favorite" (only) restaurant in Kosair - McDonalds - for some breakfast.
We knew she'd be delivered to 7 West, so we went to meet her. The floor is only a little more than half full, so it's quiet as we arrive. They recognize us (sad), and show us to Harper's room. It's one we haven't been in before (there aren't that many left that we haven't yet frequented). We sit, and wait.
We wait for The Hulk. See, Harper doesn't wake well from anesthesia. She transforms from sweet adorable Harper to angry scary Harper, and she'll stay that way for a few hours, before an internal switch flips, and the Harper we love re-appears.
The Hulk did not disappoint. Once she arrived and awoke, it was on. The nurse needed to hook fluids to her Broviak. She said no. She smacked at the nurses hand. She screamed blood-curdling screams that I'm confident we're heard by the entire floor. She grabbed, she cried, she wriggled and writhed. Melissa and I plus 2 nurses held her down to get the lines hooked up.
She accused the nurse, the doctors and the hospital of trying to kill her. She wanted the line out. She wanted the IV pump off. She begged me to lock the door. When I explained there are no locks, she demanded I bar it to keep them out. When all that failed, she asserted we were trying to kill her too, and that the medicine/fluids were poison.
This is all a perverse reverse of what happened when her line came out last time. Then she begged for it to be put back in, and even offered up her arm for a peripheral IV.
After a dose of fentanyl and lorazepam, she's back asleep - hopefully allowing the hulk-ifying anesthesia to wear off so she can be a little bit more her normal crazy self and not the demon-possessed child she just demonstrated.
But, we've been down this road, so we know a little of what to expect. Despite despising that we are here, it is oddly slightly reassuring to be in familiar surroundings.
Much of what we expect should be very similar to our experience before. More of the same, just stronger.
Second verse, just like the first. A little bit louder, and a little bit worse.
Surgery Day
It's 5:30am, and we're up and moving. Some (actually most) of us begrudgingly, with a few others left sleeping almost unaware.
Today Harper gets her dreaded line surgically re-installed. Sad, because it signals more chemo (likely stronger than before) but somewhat bittersweet, because it will mean less needle sticks as the blood tests ramp up in the coming weeks.
Later today, or maybe tomorrow (don't know) chemo will begin again.
Prayers and good wishes welcome on Surgery Day, and everyday afterwards.
Today Harper gets her dreaded line surgically re-installed. Sad, because it signals more chemo (likely stronger than before) but somewhat bittersweet, because it will mean less needle sticks as the blood tests ramp up in the coming weeks.
Later today, or maybe tomorrow (don't know) chemo will begin again.
Prayers and good wishes welcome on Surgery Day, and everyday afterwards.
Thursday, July 24, 2014
The Clock is Ticking
Tic Toc. Tic Toc.
My current coping mechanism is to try to forget that we thought we were past all this, and instead take the view that we got a nice, extended break in therapy, and we're now entering the next stage of treatment. This way I get to look at the summer in a positive light.
But time is ticking away. We learned this morning that Harper's central line will go back in, via surgery, on Monday morning. We will arrive at 6:30 AM, be in surgery by 7:30 and, immediately upon completion of the surgery, be admitted to the hospital to start the next round of chemo.
We're happy that it looks like we'll get the same surgeon as we have had before. We really like her, and feel more comfortable with the procedure with her with the scalpel.
Until then, we'll be trying to act as normal as possible, and enjoy the time we have. Swimming is high on Harper's list of things to do, as once the line is back in, swimming will be much harder to do.
The clock is ticking. Our "break" time is running out.
My current coping mechanism is to try to forget that we thought we were past all this, and instead take the view that we got a nice, extended break in therapy, and we're now entering the next stage of treatment. This way I get to look at the summer in a positive light.
But time is ticking away. We learned this morning that Harper's central line will go back in, via surgery, on Monday morning. We will arrive at 6:30 AM, be in surgery by 7:30 and, immediately upon completion of the surgery, be admitted to the hospital to start the next round of chemo.
We're happy that it looks like we'll get the same surgeon as we have had before. We really like her, and feel more comfortable with the procedure with her with the scalpel.
Until then, we'll be trying to act as normal as possible, and enjoy the time we have. Swimming is high on Harper's list of things to do, as once the line is back in, swimming will be much harder to do.
The clock is ticking. Our "break" time is running out.
Wednesday, July 23, 2014
Calm Before the Storm
I suppose life is a bit like living on a tropical island. At some times, it's pure paradise, and suddenly, without warning, along comes a storm, ferocious and devastating.
It's been about 3 months since the last storm ended. We've enjoyed 90 or so days of the tranquility that comes with no evidence of disease. We've spent our time trying to repair the damage, and enjoy the beautiful weather. But yesterday we got the news that Harper's cancer has reared it's ugly head again. A storm is once again on the radar, barreling towards us, gaining strength.
We knew there was a good chance this would happen, but we laid in the hammocks and played in the sand, warily watching the sky, but hoping against hope it wouldn't come. But apparently the last storm didn't blow itself out completely. It left remnant winds that have stirred and are back again.
We know it's coming, but we don't want to believe. Do we have the strength to endure it again? Will the wind and rain beat down stronger and more damaging than before? Will our shelter hold? How high will the storm surge rise?
Soon, we'll get the plan. Shortly we'll know better what we're up against. But until then, we sit, in apparent paradise, waiting, thinking, wondering, worrying. What will happen? When? How will it compare to what we've been through before? Will what we've built hold?
In many ways, the last time through we had the benefit of ignorance. We didn't know what was coming, but we were fresh, young, and strong. Now, we're more weathered and wise, and we have an idea of what to expect, and we're scared. We're tired, not fully recovered, but it will come regardless.
So we sit on the beach, play in the sand, lay in the hammocks, and fixate, knowingly, on the clouds appearing in the distance. We enjoy the last few moments in paradise before the hurricane hits. The calm before the storm.
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