A lovely piece was written about social media and cancer treatment. I was quoted extensively and look forward to interacting more with friends and supporters down there. I’m in the process of migrating my blog so some of the great comments that were quoted haven’t made it over here yet…
PS I didn’t lie about my age. I was diagnosed at 38 and am currently 39. Every other detail seems to be very accurate though!
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At what point do you lose your patience with a situation that is “beyond anybody’s control”?
I think I have learned the answer to this question.
The radiation oncology clinic across the street from my work is now “up” and (kind of) running. I arrived for my 10:15 am appointment this morning at 10:05. Soon after, I was told that the machine was down and could I wait. I asked to go back to work and have them call me, which they did at 11:30 am. I waited about 40 minutes once I got back to them and finished my treatment around 12:30 pm. As I left, they handed me tomorrow’s appointment time on a card. It said 7:45 am.
“How about the next day? Can I get on the schedule?” I asked the tech.
“We don’t know the schedule. I don’t even know what hours I’m working.”
“Will you know tomorrow?”
“I don’t know. I wish I could tell you but I don’t know.”
So in the meantime, I don’t know when I am available for other appointments, meetings, errands, classes, outings or anything for the next 5 1/2 weeks. My life is on hold because I have no idea what my regular treatment time is going to be.
Let’s put it this way: I have had 5 3/4 appointments and only 2 went on schedule and without a hitch. That’s not an acceptable ratio.
I just got off the phone with my doctor. Either they give me a regular schedule that can be adhered to (i.e., no broken machines) or I need to have my care transferred to another hospital. I am not buying that all of this is “beyond anybody’s control.” Sure, the flood wasn’t planned. But a hospital administrator solved the rescheduling problem on paper. On paper, there was no problem fitting people in from 6 am to 1 am. But everybody I spoke with at the clinic knows that the machines are not designed to run for that many consecutive hours.
This problem does not exist on paper. It exists in the real world. I wish they would have consulted the people who live in the real world.
My doctor agreed. We will try again tomorrow. If they can’t make this work, then I will transfer my care to another hospital.
Who knew I’d be banging at the doors, begging for my treatment?
UPDATE: They got it together. I am now regularly scheduled at 7:45 AM, first appointment of the day. Until July 5.
Tags: daily life, doctor-patient interaction, self-advocacy
Posted in Treatment | 2 Comments »
I was scheduled to start my 6 1/2 weeks of radiation this past Tuesday. As you might recall, that didn’t work out. After an anxious afternoon of anticipation, I was set to go there last night at 9:30 PM. They had told me it would be my longest session as they worked out the measurements of where the machine would dose my skin through four tangents of my body. So I went out with a friend, having dinner and walking around a bit, making it an overlong evening out for the middle of the week.
The clinic, because they are absorbing all of my hospital’s patients who were displaced by the flood, was running late. They didn’t actually see me until closer to 11 PM. I was wary to go down there today, given that the two times I had been there had either been a broken machine or a big wait time.
Well, today I got both. I arrived on time for my 3 PM appointment. I was first told it would be an hour wait. Then I was told an hour and a half. I was amazed at the graciousness of both the patients and the workers in this stressful situation.
Around 4:30 PM, they called me back to the treatment room. They were so off-schedule that they offered to let people skip their treatment today and re-schedule for Saturday. I was lucky, I thought, to be getting my treatment. I felt grateful to not have things thrown off for myself anymore than they already had been. I mean, I’m all scribbled over like some bad occult tattooist got a hold of me. Let’s not make this nasty neckline be a part of me longer than needed.
That’s the upper part of the region that they are radiating.
I went back and put on my gown that is not really made to open in front but they tell me to do so anyway. It leaves this awkward gap that I’m always fiddling with. It’s probably not a big deal, unless you end up hanging out in it for another hour and a half while the people around you are trying to figure out if they can fix the machine. But I’m getting ahead of myself.
Can you see the awkward gap?
So I go into the radiation room and I am greeted by the ghostly faces of my cancer sisters and brothers who get head and neck treatments. These masks look like nets that have been molded to people’s faces. They provide the techs with a coordinate system to use to aim their radiation rays. But in between treatments, they sit on the floor, looking somewhat bereft. They watch the rest of us come and go, as if waiting for their human mate to enter the room so that they can have life breathed into them again.
I climbed on the machine, which is very uncomfortable. It’s really hard and narrow. I complained about it the first night, asking why they couldn’t make it a little more cushy. The tech explained that there are very few materials that can withstand constant radiation. The machine has a big round face with a glass eye that gets slashed by a red laser when it’s doing its magic. When it starts to whir, a sign that says BEAM ON in red letters lights up in the corner. The whirring lasts about 30 to 60 seconds.
That little sign in the green frame lights up to tell me BEAM ON
So the techs come in, they line me up, they leave the room, the whir begins. BEAM ON. I hold my breath, the whirring stops. The techs come in, they move the plates, they line me up, they leave the room. BEAM ON. They come back in, move the plates, line me up, leave the room, BEAM ON.
Then the whirring slows. BEAM ON flickers. The whir starts up. BEAM ON is off again.
There is a longer pause than usual, but the techs come back into the room. They tell me that the machine has failed. The plan is to let me relax in the waiting area while they restart the machine. (Recall the awkward gap? Yeah. Not so relaxing.) These machines, they explain, are not meant to go from 6 AM to 1 AM like they have been doing. It sometimes just needs a reboot. That sometimes happens even when they aren’t seeing so many patients like they are now. They’ll see if it works again when they reboot it and let it rest for 10 or 15 minutes. Am I okay waiting? They know exactly how much of a dose they gave me for that third tangent. There is one tangent they didn’t get to, but they will once the machine is restored.
I wait in my green robe, texting my husband to let him know that I will be even later still in getting home. The techs reboot the machine. They try to get it back up whirring. It won’t whir. They try to give it a longer rest; do I mind waiting? I’ve waited this long, I say, self-consciously fiddling with the awkward gap.
The clinic manager comes out apologetically, explaining that they are having to send everybody home. They’ll make sure that I get in first thing in the morning. What about my half-dose? I ask. Well, the radiation oncologist will have to figure that out. Some guy who is not my usual doctor tells me it won’t be a big deal if I get 33 1/2 doses instead of my prescribed 33. I disagree, saying that I do not want more radiation in my body than is medically warranted.
I am trying to get through to my doctor, to no avail.
Why did everybody tell me that radiation was going to be the easy part?
Tags: attitude, awkwardness, coping, nurses
Posted in Treatment, Uncategorized | 4 Comments »
My husband and I were 5 minutes away from the clinic for my 9:30 PM radiation appointment. I had talked to a friend from Gilda’s Club right before we left to go over again how it was going to all go down. I had tried to make some kind of spiritual meaning out of the timing of the delays. I kept myself ready to face all this past the time when I am ready to get in my jammies and curl up for the night.
My cell phone rang. It was the clinic. After pulling 18 hour days in the weeks following the flood, the radiation machine had just conked out. They were canceling the rest of the appointments for the night.
My husband and I went in anyway. The technician was really nice. She, too, was displaced from the downtown clinic. She, too, had to suddenly juggle unexpected childcare.
“But I made plans for the summer,” I whined. “I counted the 6 1/2 weeks of radiation from the longest window my oncologist gave me after surgery, and then added two weeks onto that. I planned a trip for my kids to the mountains. The flood already took up one of those cushion weeks.”
Because I am not getting started until today, instead of being finished on July 2, the Friday before a 3 day weekend, I will get my 33rd dose the following Tuesday. We are supposed to have our cousins reunion the Friday of that week.
The therapists were incredibly sympathetic. That’s how cancer treatment is, they reminded me. It’s very uncertain. There are people who have to take a break in their treatment just because their skin needs a rest. It is also possible you could receive two doses in one day to get you back on schedule. It will depend on how you do.
So my husband & I got back in the car and went to SonicBurger. I got myself a hot fudge sundae.
I vented on facebook and was given a bit of perspective by one of my pals there. “Consider yourself lucky, you don’t want dosed by a machine on the fritz, you might end up like me!”
That helped. Instead of feeling frustrated that the machine conked out right before I went under its rays, I now feel grateful that I wasn’t under there when it went on the fritz.
Please, everyone. Forgive me if I don’t do what I have told you I would. Promises are hard to keep, but it doesn’t mean I don’t care. It’s just that my life is very very unpredictable right now.
Tags: attitude, coping, doctor-patient interaction, gratitude
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