The story of the 1st chemo

This is the day that the theory and discussions became real. Left at like 6 in the morning. Got to U of M Cancer Center on time, despite the fact that the drive was a little scary.

Radiation first. Terry had his simulation and tattoos (we match! - but he got marker to make his stand out) last Wednesday. The first treatment still takes a little longer, as it takes them a few minutes to figure out what to do with you, but he's out pretty quick.

Then we move the car over to the cardiovascular surgery center. About .5 miles of hall - so we drive over to move the car. The Cardiovascular Center is lovely. Kitchen is small, but awesome. Got coffee and hot chocolate. PICC nurse was wonderful - I thanked her for letting me sit in the corner of the room while she put in the line - she said that she fought with co-workers about this sometimes, but that most family members felt much better about what was going on, if they were there, and that we never were a problem. Terry said there was literally no pain, and it was done in like 15 mins. Then he and the nurse marched off to x-ray, to make sure the line is placed correctly. Perfection - they are back, and we are off to the infusion center.

Our itinerary labelled 11:30 - infustion. What desk to go to, etc. We get there, and they are like - you are scheduled for 3:30 - we say, no, Leah told us that we had to get started at 11:30, or else we wouldn't make end-of-day radiation, and that she had told us to come at 11:30. Waved itinerary. Get called back to desk in about 10 minutes - they have no time for us - Leah is off for the day. So sorry. Go away, you can talk to your onc's scheduler if you have problems.

So, off to onc's part of the floor. Scheduler comes out and very condescendingly explains that they have to adhere to the 3:30. that patients can't just change things on a whim, that Leah shouldn't have told us to be there at 11:30 - go away, how about going out for lunch?

I want to see the oncologist, I say. The nurse-practitioner shows up. She explains that there really is no time for this, but that the infusion nurses can get us started, we can go for rads, and then come back and finish the treatment. And she tells us that the infusion charge nurse will be there to give us a pager, for when they are ready for us. No, I say. We have to see the oncologist. Period.
Infusion charge nurse stops by - they are messing up the treatment cycle, I explain - somebody has to resolve this for us. It's my job to be there for my husband - they aren't doing what they said they were going to do. She looks in my eyes and hugs me, and tells me to go on doing what I need to do - that she will support me in this, absolutely.

So, the NP escorts us into a room, where we wait about 45 minutes for dr. bigshot oncologist, who sweeps in and explains to me, in a very condescending tone, that he has a very important meeting in 10 minutes, that DH can have his chemo any time this week, no big deal. And that Leah shouldn't have scheduled us like this. So, I guess, it's all her fault, trying to do what she was told to do?
And I say, My understanding is that the 5-FU infusion pump has to be in place before his next radiation treatment, and that if I'm wrong about this, please explain to me what I misunderstood.
His whole face changed - he says OK - and marches out of the room with NP - after a half hour, I go out into the hall, and grab a nurse and say - somebody better tell me what the hell is going on, because this is a crummy way to treat a patient, and that I am furious. Oh, she says, and comes back in a couple of minutes to say that they are still on the phone with the big shots in the infusion center, getting them to rearrange schedules because my husband has to have his pump in before 6 pm. Period.

Dr oncologist comes in and says everything is ok now. I say - I have a friend who's a doctor, and she told me that only a major cancer center could do the kind of treatment my husband needed to have, and that it was critical that it be done this way, so that was why I insisted on speaking to him. He puffed up, and says, well, you know, we developed most of these treatments - which they did, and which is why we were there. They just really screwed up the implementation. But, there was no discussion about his important meeting.

Infusion charge nurse comes to collect us - she is so angry. She says, I HATE IT WHEN THEY DO THIS. They mess everything up, and now you don't trust any of us, and we deserve it, and that's a rotten thing to do to people who are fighting for their lives.

Terry gets his infusion. They push the saline - 2 liters to protect his kidneys. Premeds and anti-emetics - he's taken steroid pills, so no IV steroids. Then anti-emetics - especially Emend. The big gun. If you do not have good insurance, this costs $300 PER PILL. But, it works. Then cisplatin - Oncologist had explained that platinum-based drugs are really effective against esophageal cancer. One of the people we had consulted with suggested that carboplatin might be better for kidneys - Onc says that Dr Urbe (his partner, the GOD of esophageal cancer), doesn't believe that carboplatin works against esophageal. Ok, we say. No problems. Then taxol. This one is scary - the infusion they deliver the drug in is highly allergenic, and about 20% of patients get really bad reactions. Some even anaphylaxis. But the alternative delivery mechanism, taxotere, is non-allergenic, but it costs twice as much. Comforting, eh?

Now, they rig up the 5FU pump. The U has set up a Home Med division - they have visiting nurses, they are responsible for the pump, the heparin (PICC line must be kept open with daily injections, otherwise the body tries to close the foreign body off from the blood and lymph supply - exactly what we DON'T want. The PICC line is in T's left arm, because, as he explained, he works at Panera, and he doesn't want to get his arm wet. Have some trouble getting all the lines attached, but he says, no pain.

It is now 6:30 - long day. Back to radiation, for final treatment. Check cell phone - there is a message from Krista - Mom - I'm in terrible pain. What should I do. I start phoning her.
No answer on her cell, no answer on house phone. My cell runs out of minutes - I go back and borrow Terry's - what's going on? I ask - Don't know, he says.

Keep calling child. Still no answer. We have been at the radiation center for over an hour and a half. For a 5 minute treatment. Everyone else in the waiting room has gotten their zappees and left. I go through the door - the heck with the little sign that says patients only. I've been patient! They are wheeling a lady on a gurney out - okay, an emergency. I stick my head into various rooms - I finally attract some attention - I explain that our kid left an emergency message, and I can't get her, I'm frantic, and my husband has been here for hours, and where is he?
Getting his treatment - he'll be out in a few minutes. Did NOT ask why they left us so long. Radiation departments move in mysterious ways, and fuck people over at random.

We drive home at 85 MPH. The cop who came across the median pulled the guy NEXT TO US over. Get home - she isn't there. She is at Lily's - there is a phone message. We go over and touch her - tell her it's okay to come home later.

Get home - Terry takes off his shirt while I heat some soup - his PICC line is leaking - his chest is covered in a white crust. Oh, God - call the Home Med emergency number - someone calls back in about 45 mins. She comes out to fix it. She gives me some info about the right way to check a line. Good

Krista gets back with the dog - who messed on the carpet at Lily's house.

It's after 11 PM - I have to be at work by 7 tomorrow. If chemo is like this every time, I will die.