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.

General Visit

Late last week we had become concerned about some larger purple bumps forming in a couple places along Karen's incision and scheduled an appointment to see the general physician. That visit was yesterday. Karen had a CT scan directly preceding the visit with the chemotherapy specialist last Friday. They didn't expect to find anything; it was to be used as a baseline for comparison against future CT scans, to see if cancer is developing. However, the general physician was able to tell from that CT scan that there was some fluid build up along the incision. He lanced the areas and drained them. It was clear fluid and not infected, but said it's best to let them drain.

Since he was looking at the CT scan he said it was clear of cancer, as should be expected at this point. He also said that while he didn't see a fistula, he couldn't rule it out. However, the treatment for a fistula is an ostomy, which Karen already has. So while there is reason to be concerned about it, it's just something to keep an eye on for now. Lastly, he seemed pleased that Karen's weight loss has all but stopped - less than a pound a week - but he would like to see her gaining weight again before starting chemo, as that is likely to cause weight loss as well..

Seasoning

We met again with the chemotherapy specialist last Friday. He came to the same conclusion other doctors had, that Karen wasn't quite healthy enough for chemo yet. She was still losing some weight - although less - and there was a new concern about a possible fistula. He had put some thought into the treatment and said it might be beneficial to add Avastin (bevacizumab) to the FOLFOX treatment he had originally recommended, after Karen had healed more, possibly several months into chemotherapy. It slows the body's growth of new blood vessels, which in turn, slows tumor growth. However, it also slows the body's natural healing process. Hence the delay in adding it.

When we originally met with the chemo specialist, he suggested that we might be interested in looking for some place closer to get the actual chemotherapy. The only Mayo location that currently does chemo is an hour away, and although it's only once every two weeks, it's still an hour of being in a moving vehicle directly following chemo. So yesterday we went to Arizona Oncology to meet with an oncologist there.

Karen seemed to like the place a lot. We saw the facilities there was someone sleeping while getting chemo, and they seemed comfortable, which made her happy. They have free coffee, tea, and hot chocolate, which is nice. The doctor we saw won an award in 2001 for being one of the top doctors for breast cancer in America; an award in 2002 for being one of the best doctors for women; and an award in 2005 for being a top doctor in Phoenix. While I liked the doctor, and she said she was more than happy to work with our oncologist at the Mayo Clinic, I'm not sure it's really the best choice.

I want to say the walls were really thin, but I think they were reinforced partition walls, and they met with the window in such a way that they left a big enough gap for you to hear from one room to another. While we were waiting we heard the complete conversation between a 70 year old woman, someone who sounded like her daughter, and our doctor, several rooms over. I tried not to listen, but the conversation was very easily overheard. The doctor had said they'd be using chemo that's more suited for older patients, and the daughter piped up and said, "You mean, more suited for seasoned patients." And the doctor politely corrected herself, and the daughter laughed. I hope when I'm 70, people let me call myself old. What's there to be ashamed of? I mean there's something to be said about living that long. Anyway.

The building itself can only be described as a big metal thing. While waiting to see the doctor I was sitting next to a window with shades and really dark tint, sweating. While Karen, sitting just the other side of me, was cold from the air conditioner attempting to keep the room a reasonable temperature. I'd thought of offering to switch places with her when she mentioned being cold, but the nurse who brought us in was very specific about who sat where. Karen's been having hot flashes, so the air conditioner was probably the better of the two places to be sitting anyway. The place also had really bad wifi, which isn't a big deal, but if you wanted to watch Netflix or the such, you probably aren't going to have much luck. The chemo facilities only had one TV for everyone, so you probably weren't likely to be the one watching what you wanted to see. And the place is only open Monday through Friday, so that rules out the option of getting chemo on Friday and having the pump removed on Sunday. Karen had wanted to work Monday through Thursday and just be out Friday, but that doesn't seem very likely with this location. Everyone is saying chemotherapy starts out easy, but gets more difficult over time. So perhaps she can make it work for now, but this will be a source of conflict if we go with Arizona Oncology.

Staples Gone

Karen had an appointment yesterday with the general surgeon who performed the original 9+ hour long surgery and the follow up ileostomy. Finally, the last of her staples came out. The doctor thought it was best to put chemotherapy off for another week or two until Karen had recovered some more, and had more energy. The doctor also expressed concern over her continued weight loss and once again suggested she get a scale. Karen's always just used a tape measure to watch her body weight, which actually makes a lot of sense to me, with muscle weighing more than fat, you can put on weight working out but still be healthier than before. But that's not good enough for the doctor. I told Karen we're going to have to get a scale but we can Office Space it when she's done with cancer.

Earl came home today. He threw himself at the sliding glass window when he saw Socks out there. While Earl's first attempt to penetrate the glass startled Socks, he didn't run off until Earl's next attempt several seconds later. We're keeping the doggy doors closed and putting Earl in his muzzle when we let him out. Earl's scared Socks off the wall a couple times now, and away from the glass door again just minutes ago. I'm worried after we're comfortable enough to open the doggy doors, Socks won't see Earl around and try to come in again. Every time Socks got in and we'd pick him up to toss him out, he'd purr and purr the whole way, just being held. I hope his fear of Earl is greater than his desire for attention.

Socks

Karen holding Socks up in the air. He's very docile.

One of the stray cats we call Socks has moved into the backyard. He also likes to come in through the doggy doors. He's a pretty nice cat and even enjoys hanging out with Cera, Karen's oldest dog. But Earl will be coming home soon and he thinks knows cats are delicious. So we'd really like to find a home for him. He's neutered and has his rabies shot. If anyone is interested in an adult male cat, you can get in contact with us as you usually would, or email us here.

Socks and Cera striking a pose!

When we first saw Socks he was a pretty decent sized cat, but he lost a lot of weight before he broke down and starting eating the food put out front. I don't know if his original owners moved and left him behind, or just plain ol' kicked him out. Either way, he seems to want nothing more than to hang out with people again. The only time he isn't trying his hardest to get in, is when we're outside.