Infusion #3 and a visit to Stanford ER

It’s Friday, 71 days ATN and 31 days into chemo.

It’s been an eventful couple days!

The visits to the PAMF infusion clinic are starting to become routine. Arrive. Get pumped full of drugs while working a bit. Get hooked up to the pump that’ll deliver the 5FU for the next 46 hours and leave. It was a little too boring so my subconscious mind decided to spice things up a bit.

Infusion #3 and a visit to Stanford ER

At around 10 PM the day of the infusion I went about making dinner. As I was cutting open a bag of salad and an obstinate pouch of vegetables where the “tear-off” tore off but didn’t gain me access to the good stuff inside, I thought I felt something dripping on my feet. This in itself isn’t unusual, but usually occurs after I’ve spilled whatever liquid I’m trying to pour. I hadn’t gotten that far into the dinner preparation yet. Not quite sure what it was I looked down and noticed the tube running from the port access in my chest was red. My first reaction was, “That’s weird. The 5FU is clear.” Then I noticed drops of blood on the floor, and that the tube from the port to the pump had been severed!

Now I’m not really sure how bad it is and it wasn’t like there was a stream of blood flowing out of the tube, but I generally prefer my blood to stay within my body. Remembering what the infusion nurse drilled into me on my first visit, I grabbed the pump, which was still delivering 5FU at its leisurely pace of 2ml/hour, and stuck it in the chemical spill bag. That bag that the nurse emphasized on my first visit that she had to give me but That I Would Never Use. Then I went rummaging through all the papers I had from PAMF looking for an emergency number or the oncology clinic number. That resulted in nothing but some bloody papers. In the process I did find that if I held the tube at shoulder height and put a finger over it that stopped the blood flow.

Since I couldn’t find a number to call I ran upstairs to my laptop to look up the number for Palo Alto Medical Foundation Oncology – Palo Alto. And what comes up but numbers for Palo Alto Medical Foundation Mountain View, Palo Alto Medical Foundation Los Altos, Palo Alto Medical Foundation Burlingame…but no Palo Alto Medical Foundation Palo Alto. Total Google failure! Eventually I found what I thought was the Palo Alto oncology number, but looking back was really the Mountain View oncology (when you’re slightly panicked and trying to work with one hand since the other is staunching a tube trying to leak your blood little details like which city an office is in tends to go unnoticed.)

Then….where’s my phone? Not in the office. Not in the bedroom where I normally place it pre-workout. Go downstairs. Not in the kitchen. I frantically ran around the house for a minute or two then had an idea – ask the Apple Watch to ping it! So grab the watch, fumble to unlock it, and ask Siri to find my phone. “Sorry could you say that again?” Try again. Same thing. Try again. ” “I found Michael’s phone nearby. Should I try to make it play a sound.” “YES!” I hear a pinging sound but…where is it coming from? Run upstairs. Pinging stops of course. Ask Siri to ping the phone again. Seems to be coming from downstairs. Run down the stairs and…it’s coming from the garage? Sure enough for whatever reason the phone was on work bench next to the elliptical.

Ok. Have number and have phone. Call PAMF. Naturally the message says the oncology and infusion clinic is closed, but there’s a menu option to go to the operator. Sounds good. I get connected to the operator and explain to her that I’m undergoing chemotherapy with a pump and the line from the port to the pump was cut and is dripping blood. The operator calmly asks who my doctor is, and shortly thereafter I’m connected to my oncologist’s backup. Who seemed to have had a hard time understanding what had happened. From what I can recall after I explained that blood was dripping on my (formerly white) carpet the discussion went something like:

Doctor: The port is leaking?
M&M: No, the line from the port to the pump.
Doctor: The line?
M&M: It was cut in half, the part connected to the port is leaking blood.
Doctor: Cut?
M&M: Yes I was making dinner and somewhere along the way it got cut.
Doctor: And its leaking blood?
M&M: Yes.
Doctor: That’s very unusual. (Thinking…) I’m sorry to tell you this but I think you should go to El Camino Hospital ER and have it assessed.

OK. Go to the ER. Sounds like a good idea. Call JT. At least I have my phone. No answer. Hmm. Wonder if she has Do Not Disturb on. Call again. No answer. Did I call her landline by accident? Try again, making sure to select the mobile number. No answer. By this point I was wondering if I should try to drive myself to the ER but decided that trying to drive one-handed wasn’t a good idea. So I called one of my neighbors and asked if she could drive me to the El Camino Hospital ER. Then quickly corrected myself and said let’s go to the Stanford Hospital ER since there’s that Blue Cross dispute gong on with El Camino.

Neither of us knew exactly where the Stanford ER was, but we knew where Stanford Hospital was and how hard could it be to find the ER? They should have it in blazing huge red letters right? I suggested we go to Stanford Mall, which is right next to the hospital, where there was bound to be signs directing us. So we get to the mall and sure enough – signs! The top one is red which looks promising. But its so dimly lit neither of us can make out what it says. This turned out to be true for most of the signs around the hospital. We ended up making a circumference of the hospital and found pediatric ER and the ambulance entrance, but no adult ER. Eventually my neighbor pulled over and asked Google Maps to get us to the ER. The first thing it said was “Go north on Campus Drive.” Since these were my old stomping grounds I knew we were on Campus Drive. But were we going north? The Google Maps engineers apparently have compasses built into their heads. I bet it never occurred to them that normal people don’t. After a minute or so of being thoroughly confused by Google Maps I suggested we try Apple Maps, since I knew it at least told you to turn left or right. And Apple Maps finally got us to the ER. Which indeed had blazing big red lettering. Which you can’t see from any of the main streets and is really only visible once you’re half way down the drive to the ER

Then there was the question of where to park. There were a handful of stalls on the drive leading up to the ER entrance, all of which were full. The adjacent parking structure was labeled “staff only.” After circling around my neighbor dropped me off at the ER entrance while she went in search of the elusive patient/visitor parking. There were only a couple people in the waiting area. Others trying to get there probably failed the navigation test and went to El Camino or Sequoia hospital in defeat. As soon as I got through the screening checkpoint I was checked in, they took my vitals, and a nurse came over to clamp the tube (now why didn’t I think of that?). Then I waited for about 15 minutes during which a young woman came in in a wheel chair and clearly a great deal of pain. Apparently she’d had surgery the day before and something wasn’t quite right. Another young man also came in who seemed to have a foot or leg injury (he kept flexing it and gasped each time – if it hurts why do you keep doing that?)

Then a nurse brought me back, disconnected the severed tube from the port access, and tried to assess the port. The port is bidirectional – blood can be drawn from it and medication can be pushed through it. She tried to pull and was only able to get a little blood. Then she tried to push saline and couldn’t, and mumbled about it being clotted. I was led back to into the waiting area. A few minutes later another nurse came out and said unfortunately it looked like I’d need to be “bedded.” I looked at her cautiously and asked what does it mean to be “bedded?” (she wasn’t my type…) She said oh, I’d be admitted. Would it be a while? I have a neighbor who brought me here that’s waiting outside. The nurse said that the doctor would need to determine that but I shouldn’t need to wait long to be admitted.

Sure enough within five or ten minutes I was brought back to a room and a nurse came by to admit me. After another few minutes a doctor came in and, after I once again explained what had happened, looked at the port and grabbed a syringe. She was able to draw and push and said the port’s not clotted and seems fine. That was a relief! She said they might want to take a chest X-Ray but after talking to me a little more said maybe they don’t even need to do that, and she’d check with her supervisor. A handful of minutes later the doctor returned with supervisor in tow. He asked if I had any pain or other discomfort (just the normal chemo stuff, I replied), then said he didn’t think an X-Ray was needed and I was clear to be discharged. There was some discussion between the two on whether the Stanford pharmacy could deal with the pump so they could send me home with infusion going again, but the supervisor indicated that’s not something they could do. I mentioned that the PAMF oncologist on call mentioned he wasn’t worried about restarting the infusion, and that in the morning I’d follow up with my oncologist on what she’d like to do. They seemed satisfied with that course of action..

The doctor said the discharge would be delayed a bit since they had a trauma case coming in – and apologized that they’d need to move me into the hall since the individual would be coming into the room I was occupying. Apparently this was an All Hands On Deck case since a rather large team congregated to care for the new arrival. After waiting for about ten minutes I was discharged and my neighbor drove me home. Total time at Stanford was about an hour and a half.

When I got home I messaged my oncologist to let her know what had happened and went to sleep. The next day by 9:30 I hadn’t gotten a reply so called the Palo Alto Medical Foundation – Palo Alto main number (which is much easier to find when you can type with two hands and aren’t panicked), and was connected to oncology, who had me talk to an infusion nurse. She told me to come by and they’d take care of things. She made it sound like this was just another routine procedure at the infusion clinic. So back to the infusion clinic where the nurse fetched me from the waiting area as soon as I arrived, led me back, and dealt with the pump. I mentioned what happened and the nurse sighed and said, “the pump” as if it was the source of all evil (which of course it is). She checked out the port, which she said looked good, and then said to wait while she worked with the oncologist to see what they’d like to do. A few minutes later the oncologist’s nurse came through and headed straight for the infusion nurse who had been working with me and I heard her say something something “urgent for Mr. Minakami.” Apparently she finally saw my message 🙂. Then she noticed me and waved. Now I’ve exchanged messages with the nurse but never met her, so I have no idea how she knew who I was. I guess I’m (in)famous now. And of course a little later my oncologist wandered through looking for another patient, but then saw me and came over to chat. She said with a smile and her ever-cheerful demeanor that I’d provided the morning’s excitement, and not to worry she’d sign the order for the replacement pump as soon as it was ready. So they decided to continue the infusion (darn!) and I was outfitted with a 23 hour pump. And instructions to stay away from anything sharp.

So now it’s Friday. I made it through the 23 hours without managing to sever any tubing or smash the pump into a million pieces. I’m once again pump-free (and more importantly free to shower!). And of course starting to develop that feeling like the flu is coming on, which will no doubt last for the better part of the weekend.

Lessons learned:

  1. Do not eat vegetables while undergoing infusion with the pump. They inevitably require preparation with scissors, knives, or other sharp objects. Eat at McDonalds instead.
  2. Do not get a house with white carpeting. It’s really, really, really hard to get blood out of it. Same applies to white walls though they’re a little easier to clean. Fortunately it’s almost time for the Stanford-Cal Big Game so I can just say I’ve decorated with Stanford colors.
  3. Practice getting to the ER, especially if it’s associated with a prominent academic institution. You’ll have to pass a navigation test before being allowed in.
  4. Don’t use Google Maps unless you’ve had a compass implanted in your head.

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