One Down

So yesterday, about 12:30 pm, the pump beeped to let us know it had finished. Karen was napping, but got up and clamped the tube from her port and turned the pump off. They told us to just come in whenever it's done. It took us about 30 minutes to get ready and another 30 minutes to get to Arizona Oncology. We only waited several minutes before they took us back and removed the pump.

To follow up from the last post, food hasn't been bland, so dinner that first night was probably just boring. The taste of water has pretty much returned to normal since this morning. The cold sensitivity is starting to fade already, but the whole time she was on the pump, if she touched something too cold it burns and tingles, and if she drank something cold it felt painfully cold down the back of her throat. If she wants a drink of filtered water from the tap in the middle of the night when the pipes are coldest, she has to warm it to room temperature in the microwave.

It was Pie Rush Wednesday at Village Inn, so after the pump was removed, we stopped for fries and a slice of French Silk Pie. She enjoyed the fries but got full before getting to the pie and decided to just take it home; this might have been better with her cold sensitivity anyway. The Village Inn is adjacent to a Tutor Time who was busy towing someone who parked in one of their designated parking spots, even though it was a handicap spot. The manager put a sign up on the door to let other customers knows that Tutor Time was towing anyone parking in any of their designated parking spots and that they had no control over the situation. I still can't get over them towing a car with handicap plates parked in one of their handicap spots.

The fries, which are normally quite safe, came out of her stoma quite quickly, nearly as whole as they were when they went in. Her stomach acid seemed to eat away at the wax ring much quicker than it normally would and was a bit painful. So this is diarrhea with a stoma, slightly better than diarrhea without one. While there would be no need to rush to the toilet or anything, she did get dehydrated and felt quite sluggish. Although, to be fair, she felt quite sluggish most of the time she was on the pump.

While she did have some energy Monday, she slept a lot both yesterday and the day before. She also had a pretty bad migraine yesterday. She had to take two doses of her migraine medication to get rid of it, and as I mentioned before, she doesn't like how she feels when she has to do that. Headaches are a possible side effect, but it's going to be rough if it brings on migraines every time.

One side effect they didn't tell us about is hiccups! They didn't start until after the pump was removed, but she seems to be getting them more frequently as time goes on. The hiccups seem to annoy her, but she says it's not that bad, and she can control them well enough.

Before the big surgery, when we had asked if they were going to do chemotherapy afterwards, they said it depends how "well" things go with the surgery. So when they told us the surgery went well, we thought maybe there'd be little to no chemo. But it turns out we interpreted the message backwards, if the surgery went well then she's strong enough for chemo - perhaps if they couldn't remove all the cancer they'd opt out of chemo and just let her die as peacefully as possible? I don't know. When we asked how long they would want her to be on chemotherapy, they told us 6 to 12 months, again depending on how "well" it's going. Initially we thought that meant if things go well, they'll do the shorter treatment, but, like before, it sounds like we got it backwards. Doing "well" means the chemo is preventing new tumors from growing and she's healthy enough for more chemo. So, if everything goes "well," we're looking at 12 months of chemotherapy.

She's had but one treatment, and is already saying she doesn't want to do chemotherapy anymore. I asked if it was worse than she expected, and she said no, but she had expected it to be pretty bad. The doctors - and everyone else we talk to - warn us that it gets worse over time. So I'm not sure if this first session was bad enough on it's own, or if she's just trying to imagine it getting worse. We seem to have come to an agreement, and she will continue, but I hope it's worth it for her in the end.

First Day of Chemo

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.

Possible Side Effects

Karen decided she wanted to have her chemotherapy with Arizona Oncology. She says the staff is very nice, which is important to her, and it came highly recommended. So earlier in the week we had a visit with the physician's assistant to schedule the chemo treatment - FOLFOX 6 - and to go over things like side effects and precautions.

Starting on November 18th, she will be receiving chemo every other Monday, leaving with a pump which delivers more chemo for 46 hours, and returning Wednesday to have it removed. She asked about having chemo Friday and the pump removed by a home health nurse or nurse at another location, but was told they couldn't do that. She seems quite eager to return to work, so hopefully the chemo won't prevent that. However, if it does, she says she'll certainly reconsider taking chemotherapy at Mayo Clinic.

There's the possibility of all the usual stuff you hear about: nausea, vomiting, diarrhea (or faster output for people with a stoma), constipation, and fatigue. We're told they are able to manage these side effects quite well. When you see someone with cancer who is bald, it's usually not from this kind of chemotherapy, but other kinds of chemotherapy or radiation therapy. It's possible there will be some hair thinning, but even then, it's not usually that bad, and might not even be noticeable.

And, of course, she will be immunocompromised once again. Just in time for the holidays! They say if she catches anything, if anything happens, no matter how small she might think it is, to give them a call right away. For example, even if it's just a cold, they wouldn't want it turning into an infection, and would preemptively prescribe antibiotics. Seems reasonable to me.

It's also likely she will have numbness and tingling in her fingers. This is suppose to go away shortly after each chemo session, but it sounds like everyone is different as to how long after. It's even possible that the loss of sensation could start to become permanent, lasting from one session to the next. This would indicate that she's heading towards permanent nerve damage. However, if that starts to happen, they'd just switch the chemo drugs around a bit.

One of the more unexpected side effects will be cold sensitivity. It will last from the start of chemo, to 72 hours after the pump has been removed, possibly longer. The cold sensitivity not only be to things like food and drink, but to things she touches, such as cold car keys or objects in the refrigerator or freezer. She has freezers at work, but she says there's special gloves you use for that anyway. So this shouldn't be a big deal.

Another one that surprised us was the taste of metal in your mouth, and a sensitivity to the taste of metal in foods. The physician's assistant suggested we get plasticware and glass or stone cookware to help avoid that metal taste, and suggested chewing gum to get the taste of metal out of your mouth. She's also expected to have a change in taste buds. She might dislike things she normally likes to eat, and may start to like things she didn't like before. Tastes usually goes back to normal after treatment ends.

I think the scariest sounding possible side effect was short term memory loss. It doesn't sound incredibly common, but I never like to hear about things messing with your mind. We were told even if it happened, it's generally not debilitating, and you can learn little tricks to work around it. So far all of these side effects are temporary, but I wish I had thought to ask if this one was potentially permanent.

Afterward Karen told me she's actually excited to start chemotherapy. Not because it sounds like fun or anything crazy like that, but because it's one more step towards being through with cancer.

Hot Hot Hot

Last week there was an appointment with the gynecological oncologist we saw on our first visit to Mayo. He also performed the hysterectomy part of the surgery done on September 9th. The biggest issue affecting Karen's quality of life are hot flashes. She gets anywhere from 10 to 15 a day, which is roughly one an hour. It's not only uncomfortable, but it's starting to keep her up at night.

Before they knew the source of the cancer, the only thing they were sure of was that there was cancer on the ovaries, which raised some concerns over hormone replacement therapy. Those sorts of cancers often have hormone receptors which, when activated, can encourage their growth, making it an all around bad idea to give such a patient estrogen. However, since the cancer turned out to be colorectal in origin, that doesn't necessarily rule it out.

So the doctor wrote Karen a prescription for 1 mg of Estrace, which is a naturally occurring estrogen. It's the smallest dose possible, but we were told if it doesn't take care of the hot flashes, he can up the dosage. The caveat being, before starting the Estrace, it has to be approved by the oncologist we're working with in charge of the chemotherapy and subsequent follow up care. I left a message with his office, but we're still waiting on a call back from him.

Silly Urologists

Karen had a couple of appointment with urology on Halloween, but she woke up feeling bad and ended up with a migraine. Overall, the bad days are fewer in between, which is good, but still they tend to run together. Her migraine medication allows for a second dose if the first one doesn't do the trick, and she ended up taking both, but she doesn't like how it makes her feel when has to take the second dose. She passes in and out of consciousness, and feels "loopy."

The appointments were actually scheduled while she was still in the hospital. When she peed she couldn't void completely, and even a catheter couldn't get the last 200 to 250 ml out. No one seemed to believe the catheter wouldn't drain the bladder completely, so everyone kept coming around to try their hand at. We had two different doctors and more nurses than I could count attempt it. Some flushing it, other's just trying to put it in further or less far, holding it at a certain angle, trying a thinner catheter, a straight catheter, you name it. But nothing worked. The bladder scan never showed less than 200 ml. Ever. Looking back, it was arguably the worst part of the care Karen received at Mayo Clinic Hospital. I'm sure some things felt worse than all the back and forth with the catheter, but you could tell it was not only painful but stressful as well, and they never got it to drain. There were way too many attempts made. All that pain and stress, for naught. The day they released her they scheduled a flow test and a follow up directly afterwards, but they scheduled it over a month off, on October 31st of all days.

We assumed the long delay was just to let the swelling from the operation go down, for things to heal up, and to make sure any medication that could be giving her side effects were out of her system. After all, everything seems to be working now. Karen says she doesn't feel like she's retaining anything when she pees, but that's how it was near the end of her stay in the hospital as well; it felt like she was voiding completely, but they'd want a bladder scan just to make sure, and then that would show otherwise (and here comes someone with a catheter). So I suppose it's possible she's still retaining.

I called to reschedule and was told the earliest they could get her in was December 25th. Oddly, it didn't strike me as Christmas until later, what hit me first was the huge delay until she could get in again. Two months! Maybe we assumed more from that initial delay than we should have. The scheduler could tell I was surprised by the delay and said if I talked to the office directly, they can sometimes open up an earlier slot, and offered to transfer me. Sure enough, they made an opening. November 26th. So we went from Halloween to Christmas, and then to the Friday after Thanksgiving. Karen joked that they must only work on holidays.