Today was Karen's first day of chemotherapy. Somehow Cera got into some food while we were out. I would say that after being home so often we forgot about checking for things she might get into while we were away, but we didn't. Before we left we explicitly checked for any anything near the floor that she could get into. But through some sort of guile, Cera got into a bag on the table that we had assumed would be too high and too far out of reach for her to get. Perhaps she stood on something nearby? I've seen videos of dogs pushing things around to stand on, but she's such an old dog. I guess it will forever be a mystery. She's so stuffed she waddles when she walks. I heard Karen asking Cera if her bowl was full of jelly.
We arrived at 9:15 am for an appointment with the Arizona Oncology doctor. She double checked the pills Karen's been taking and warned us that Coenzyme Q10 is a powerful antioxidant, and as such, may protect cancer cells from the effects of chemotherapy. So Karen agreed to stop taking that. The doctor did one last inspection to check Karen's incision for infection - it's still draining - and gave the final OK to start chemotherapy.
Somehow we ended up waiting till 10:40 am before they took us back to the treatment room, and then after being seated, they didn't actually start the chemo for over half an hour, somewhere closer to 11:20 am. The place is actually a bit small, and it was so packed that some people couldn't start their chemo until others had finished. The nurse helping us said the wait was much longer than usual due to everyone trying to get their chemo in this week - so they will have a full week to recover before thanksgiving - and that the wait will get better after the holidays are over.
We were both kind of surprised that they didn't seem very cautious when accessing Karen's PowerPort. For those who don't know, the PowerPort is a device that allows for easy venous access for things such as: blood withdraw, IV therapy, and chemotherapy. Karen had it installed about a week before her big surgery. At Mayo Clinic they treat it like a like a serious vector for infection. Before accessing it - a fancy way of saying, putting in a needle - they wash up, put masks on everyone within 3 to 5 feet, including Karen herself, and then open a sealed, sterilized kit full of everything else they will need. They put on the sterile gloves included in the kit, and start by cleaning the skin over the port with alcohol wipes also included in the kit. The needle and cover are included as well. At Arizona Oncology, the nurse put on gloves from a box on a nearby cart, she asked Karen to hold her shirt away from the port, reached over and cleaned the skin with alcohol swabs she brought, and walked off to find a needle while it dried. No masks, no specially sterilized gloves or kit. It seemed sterile enough, and almost makes the whole rigmarole they go through at Mayo Clinic feel silly. Almost.
The needle is also different than the one she's use to at Mayo and this one hurt more. I think maybe it's a bigger gauge. The nurse explained things so quickly and simply that some of the meaning was lost, and she was in such a hurry we didn't stop to question her. All I could gather was that this needle was "bigger" and inserted "at a different angle" so it would be "more comfortable." Nonetheless, it seemed to bother her from time to time throughout the day. We saw someone there getting chemo through an IV in their vein and it looked like so much trouble placing the IV, and then after that it wasn't working right and they had to find another vein. We both felt bad for the woman. A port is such a better solution. It hurt at first with Mayo Clinic as well, but they explained to us that over time it lessens, and it did so until it was completely painless. So we assume it'll get more comfortable over time like before.
The infusion took roughly two hours and they changed the drugs several times. She started with a quick dose of the steroid Dexamethasone. They told us that Karen is going to want to mow the lawn when she gets home. She didn't have that much energy, but she did seem a least a bit energized. It also makes her anti‑nausea medication work better. The whole of the treatment was pretty painless for Karen, except she had a hard time getting comfortable in the chair. It doesn't go back far enough to feel like you're laying down and she doesn't like to be sitting upright for long periods of time without moving around. We got up to walk down the halls of the building and that helped. The wireless was working fine today, which is good, but we mostly just talked anyway.
They had told there would be snacks for patients they could eat during treatment, but I warned her there probably wouldn't be anything there she could eat. So she brought along some apple sauce and a smoothie I had made and bottled the night before. Sure enough, everything there was limited either by her ostomy dietary restrictions, or her gluten intolerance. Although they did have Gatorade and bottled water she could have. They also have a coffee machine, so she had some coffee. Anyone, even visitors, were allowed to use the coffee machine, and it also made hot chocolate. I had three. They're small cups! She did get hungry while there and ate the applesauce, which is generally a very safe bet, but became nauseous immediately after.
When they had finished with everything else, they attached the pump that would deliver the final 46 hours of chemotherapy; we'll be back Wednesday to have it removed. It's a little bit bulky, but has a fanny pack attachment that looks cute on Karen. When it dispenses the chemo every couple seconds it makes a soft mechanical noise that sounds a little bit like a squeaky door opening somewhere off in the distance. It's the same noise the system at Mayo Clinic made as it dispensed medication into her IV, so she's completely use to it, and said she has to focus on it to hear it. We were told if there's ever a problem with the pump to simply call them there at Arizona Oncology. Since the pump is proprietary, if we go into emergency for a pump problem, not only are they probably never going to see their pump again, but the nurses at emergency will just end up on the phone with Arizona Oncology doing the same things we could have done over the phone.
All said and done, Karen says Mayo Clinic has spoiled her. The port access was so proper and clean, the nurse to patient ratio was higher, and the chairs that we saw "just looked so comfortable." But she says she's not upset with the treatment she received, and thinks it all seems reasonable. She says it's likely the norm outside of Mayo Clinic. For her, the additional half hour to and from the Mayo Clinic wouldn't be worth the more comfortable setting, additional personal space, and increased nurse attention, but seems to be second guessing herself, and I don't want her to feel bad about the decision. If we can be in and out in two hours then it seems worthwhile spending only one hour driving instead of two. We'll see if things improve over the next several sessions. If we end up changing, it's not a big deal. Everyone's professional, I don't think anyone will have hurt feelings.
I can only imagine the slower rate of chemo delivery that the pump provides is easier on her. She felt better shortly after, and her appetite returned. She was quite hungry so we grabbed some fast food while we were out. Everything still tasted fine to her at this point. Although she did get an ice cube stuck in her throat. It wasn't an I-can't-breath sort of panicked feeling, but more of that feeling you get when you swallow pills and you can feel them lodged in your throat. She drank some warm water from a bottle in her backpack and it went away. Turns out, there was no ice cube; her first experience with the increased cold sensitivity had just snuck up on her. She's been fine just drinking room temperature liquids since then.
Her thumb cramped up maybe an hour after that, but only that once. She's had some minor aches and pains throughout the day, mostly centering around her neck, but nothing too bad. Later in the evening she realized that when she touches something cold, like something from the fridge or even cold water from the facet, it feels like she put her hands in a -70 degree freezer. Her fingers tingle a little and she has a burning sensation. She has experience with these ultra cold freezers at work, so that's what it made her think her of. It passed after roughly 5 minutes. Once again, this is the cold sensitivity they had warned us about. She said dinner was a little bland, and wasn't sure if it was due to the chemo, but sometimes when you're on a restricted diet, food is just a little bland. Before bed water began to taste bad, even bottled water. She says it's not a big deal, as long as she knows there's nothing wrong with the water she can drink it.
It's tricky figuring out how to sleep with the pump. Karen has no headboard or bedpost to hang the pump's fanny pack on as other people on the internet seem to have gotten comfortable doing. She's sleeping with the pump next to her pillow, but the IV tubing isn't long enough for her to turn over in the middle of the night without first moving the pump. At least that should make it hard to get out of bed without feeling the tubing pulling on her and yanking the pump out or knocking it to the ground in a half awake state while trying to get to the bathroom.
