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.

Trip to the ER

Karen has been having increasingly more intense gas pains. We were trying to be extra careful with what she ate. We tried probiotics along with beano or lactase pills whenever either applied in the slightest. But it seemed to get worse and worse, no matter how careful we were. After reading about other peoples' experience online we figured there was a good chance it was a partial blockage in her intestines due to the new stoma. Karen knew we had a couple appointments today, so she decided to just wait it out and talk to the doctors about it.

At roughly 2 am Karen woke up in a lot of pain. She had suffered through these pains before and it always seemed to pass. So thought she'd try to ride it out one more time. However, for 3 hours there was barely any output from her stoma; nothing but a little, almost clear liquid. A few minutes past 5 am, the pain became too much. It would spike to a 9 out of 10 or so, before going back down a little. She was getting more and more nauseous, and ended up vomiting. It took some of the pressure off of her stomach, which had felt so bloated and painful, but it was only temporary relief.

We contacted the 24 hour line to reach the doctor on call, but after a few minutes of waiting for a return call, we realized that no matter what he said we were going to have to go in to emergency. He did return our call on the way in, but there wasn't much to say other than we thought there was a blockage and we were heading in. We went to the Mayo Clinic Hospital and were pleased with the short wait. There was probably no more than 5 minutes waiting, and then 5 minutes of a nurse asking questions and gathering her history. Then, a couple minutes later someone came in to take us back to a room. They apologized for the wait and said they had a lot of people come in right before us. We were surprised they apologized. It was probably the shortest wait time I've ever seen - or hear of - from the waiting room to the emergency room. So the extra time spent heading out to Mayo was certainly worth it.

While it sounded like a blockage, they wanted to make sure they knew what they were dealing with and they lined Karen up for a CT scan. They gave her Dilaudid - the one that's a derivative of the morphine family - to get the pain under control, and anti nausea medication to help with the nausea. And then to prepare for the CT scan, they gave her a fairly decent sized bottle of contrast to drink. Omnipaque to be more specific. I guess the thing has a reputation for making you go. Sure enough, out of no where, the stoma started emptying. They schedule the CT scan an hour after you drink the contrast, but she was so backed up they were still able to see that there had been a blockage. Karen said she worried for a moment they might have thought her crazy. But they said they see this happen all the time with the contrast. We asked for some contrast to go, but I guess it's a better joke than request.

We think we've narrowed the culprit down to a bagel she ate on Thursday. It's actually a pretty big no for someone with a new stoma like her's, but she really loves bagels and thought just eating half shouldn't be too bad, especially since they had encouraged her to eat more fiber at one point. Lesson learned. The reason it wasn't obvious from the start was because Thursday was also the day her Percocet prescription was officially halved and we had started to cut back on it. It was also around the time we realized Alieve was working better than Advil for her pain. So it was masked fairly well, and we didn't know what was to blame for what.

I also mentioned that Karen had two appointments this morning. But of course, we were in the ER and weren't able to make it to the building next door. The first appointment was with the doctor who did the original surgery. He - and his "entourage" - came to us for the appointment. And on top of that, they stopped in just after the CT scan had finished, so he was able to provide us the results I mentioned earlier, and then do the rest of the exam. They ended up removing most of the staples, but left several in at a couple areas where her incision had been healing the slowest.

The second appointment was to be with an ostomy and wound care nurse. She, too, came to see us. Karen asked if there had been another option for dealing with the blockage, as she had read something online about flushing stomas, but the nurse said they didn't do that for her kind of stoma. So even if she had been able to hold off for that appointment with the ostomy nurse, it doesn't sound like it would have done any good. In the end, it turns out all we could have done is reverted to a liquids diet until the partial blockage had cleared on it's own. This is certainly a learning process.

While it had slowed down a bit, with things moving, they made sure she could tolerate a liquid diet and then released her around 12:30 in the afternoon. She is feeling a lot better now as far as the pain goes. There's still some nausea cropping up from time to time, but she's still backed up a little as well. All said and done, I think we will see much fewer bad days in the mix as we figure all of this out.