Radiation Cancled

The nurse called both Friday and this morning to check on Karen. By the weekend things had finally settled back down to the point where Karen felt she should be taking laxatives again, but it turned out to be a little too soon. Nonetheless, by Monday she did feel things were where they should be. This turned out not to be good enough for our radiation oncologist, who canceled the remaining treatments. He must have been expecting a faster recovery. We were both disappointed this was the end of the radiation treatment.

It feels like we almost never get to finish anything we start. At Mayo, we've seen - actually heard - a lot of patients having a little party/song put on by the staff when they finish a long series of treatments. It's not a food and presents kind of thing, but it is a celebration. I doubt it would have meant much to Karen or me, but not having such a celebration weighs on me. Every time I hear it happening off in the distance it makes me think of all the things we've had canceled early. This includes Karen's first series of chemo treatments, the short run with Xeloda, the clinical trials, and now the radiation. Of course it's good there's always someone watching out for Karen and stopping things when the costs outweigh the benefits, but it still feels disappointing when it happens unexpectedly.

Third Week of Radiation

Over the weekend the frequency with which Karen had to go to the bathroom continued to increase, and by Tuesday she was going roughly once an hour. The radiation oncologist said radiation can cause this, but it shouldn't be happening at this dosage. He also said 30 units (Gy) of radiation was planned over the 15 treatments, and we are only at 22, whereas intestinal distress is pretty much unheard of with less than 45. He thinks this may be the body warning us the radiation is affecting the intestines in an unexpected way. His biggest concern seems to be that of long term side effects.

So he put the radiation treatments on hold. Mayo is closed for Thanksgiving anyway, so we weren't going to get radiation Thursday, but we will be skipping Wednesday and Friday. This leaves us at 11 of 15 treatments. If everything calms down then we'll finish the remaining 4 treatments starting on Monday next week. If not, then the doctor feels it's likely we've done enough treatments to mitigate at least some of the pain. We talked about other options, such as treating just the most painful spot, but since we don't know which area is causing the problem we can't be sure we wouldn't end up doing more harm than good. Ideally things will just settle down so we can finish.

Second Week of Radiation

This last week of radiation turned out to be a lot harder than the first. The issue seems to be that the tumor sites are getting inflamed from the radiation and causing more pain. We had been warned about this but we didn't realize it would be significantly more painful. Tuesday night Karen started to feel more of an aching on her left side. When she got up in the morning there was a sharp pain upon moving. She said it felt like something inside her was tearing. At certain times standing up was painful enough to make her double over and gasp for air. They upped her pain medication by a significant amount when we went in that day. 50% to be exact. Karen felt like that might be a bit much and wanted to try out just a 25% increase. By the end of the week she was on the full 50% increase and wondering if it was enough. The increase in dosage has helped with the dull aches which also accompanied the new pains, but they don't seem to help a lot with the sharp pains that hit her at random times when getting out of bed or standing up. The left side is still worse than the right, but it does seem to be affecting both sides.

The only bright side to this pain is for once it actually is the cancer dying that's causing the pain. Something we've hoped was the case in the past, but turned out not to be. Since these tumors are near the surface we've decided to try a menthol rub like Icy Hot. If that doesn't work we want to try the lidoderm patches that worked so well with her localized pain the past. Her fatigue isn't getting any worse; unfortunately, she still has energy but can't do much without the fear of hurting. She's even finding herself awake at night when she wants to be sleeping. We've heard the radiation can also cause diarrhea, but it only seems to be balancing out the constipating effects of all this new pain medication. She has been taking fewer laxatives to stay regular, but it's yet to cause a problem.

First Week of Radiation

Karen's first week of radiation was so mild I'd considered not posting about it at all. We started Tuesday because Karen had been hoping to attend a particular charitable event on Monday. But she just felt too bad to go. However, as the week went on and we were further away from her last day of chemotherapy, she continued to improve. My biggest concern over starting radiation was fatigue, but by the end of this first week she has more energy than I've seen in awhile. The new pain meds seem to be helping a lot and aren't having the same lethargic effect on Karen that she had when on this dose before. Perhaps she has built up some tolerance.

I suggested she treat the areas where we're expected to see the sunburn‑like skin irritation as if it were already there, and to keep lotion and ointment on the areas. Even though we can't see any damage after these first treatments there's no question that damage is being done. So we'll see if that pays off in the long run. They did tell us we won't begin to see these kinds of side effects until we're 5 to 10 treatments in. The treatment themselves are between 5 and 10 minutes long. That's it. Scheduling still has to put us down for a 45 minute block due to what sounds like machine prep that has to be done, but Karen pretty much goes straight in after we arrive. We've never had to wait more than a few minutes.

First Radiation Treatment

The doctors built a 3D model of Karen's abdomen using the CT scans taken during the simulation. They measured out three beams to target the three sites. One beam treats the tumor on her left, while the other two both line up with the tumor sites on her right. It sounds like they would have wanted two beams for one area anyway, the one that's close to her small intestine. So rather than treat one of the spots separately all in one go, they are able to treat both areas with overlapping beams. This is possible because both sites are aligned with the large scar from her previous surgery. There will be some scar tissue between the two spots that may fall along the lines of the beams but there's no harm there.

This session, while shorter than simulation, was still much longer than future treatments will be. This is because they wanted to make sure everything lined up with the 3D model they made and that nothing had shifted or moved since the scans. This consists of Karen laying in the custom fit mold they had previously made and having areas measured out on her skin with a marker. They were able to feel the tumors under the skin and see that everything matched as it should. They also covered the three small marks they gave her last time with somewhat larger stickers to help line up the machines in the future. (These stickers are water resistant and should stay on just fine while bathing.) Several pieces of metal were machined to fit perfectly over her abdomin to prevent the beams from going where they shouldn't. These were also fitted to make sure they laid flat against her skin and were smooth and comfortable. There's also a blue, thicker, almost skin like material of a calculated width that they place over other areas to dampen the beams there. Everything was as planned and nothing had to be recalculated or redesigned.

There will be 15 treatments, which means three weeks of radiation. Karen's different had doctors discussed this and rather than get that third week of treatment while on chemotherapy, we'll be waiting three weeks before starting chemo again, instead of the usual two. This way, all radiation treatment will happen while she's off chemo. The first treatment itself was very quick and entirely painless. Everyone involved is very nice and overly cheerful. Karen's pretty happy with the way things are turning out.

Lawn Surfing

The new chemotherapy drug Karen's on, Lonsurf, has had only very mild side effects. There is some nausea by the second week, and yes there's the usual - often overbearing - chemo fatigue, but all of the other horrible side effects of chemotherapy seem to be absent. She says her sense of taste is off a little, but it's only a subtle difference. The only other thing is it can be a little tricky getting two dosages of treatment 12 hours apart when you're sleeping a lot. It has to be taken with food and sometimes it works out such that it's a little difficult, or if nothing else, frustrating, for her to wake up to eat something.

We're all set to start radiation treatment next week. There was something Karen had wanted to do Monday and treatment couldn't be scheduled around it, so we'll be starting this coming Tuesday instead.

Radiation Planning

Earlier last week we met with the radiation oncologist and went over the treatment. Karen identified three painful spots for the doctor. Only one of these can be treated in one shot. One of the other spots might be too close to the small intestines to treat all in one go, the other is certainly too close. He would feel better treating those spots over a 3 week period. Using the scans taken during the simulation, the doctor will work with a physicist to develop a plan that will shrink these tumors. While he plans on developing a 5 day a week, 3 week long treatment schedule, he still plans to treat one of the spots all in one go on the first day. This could reduce the amount of setup and adjusting they would have to do each treatment for the remainder of the treatment.

We were told that with radiation treatment, only 80% of patients have reduced pain. So one in five people will have as much or more pain than before. We were also warned that the cancer may swell up and have a reaction as it is dying - as any irritated part of your body would. So there may be a period of time where the pain is actually worse. There will also likely be a sunburn‑like irritation to the skin around the areas they treat, but it's not suppose to be worse than an actual sunburn. The other common side effect is fatigue. Fatigue is the one thing we've been seeing the most consistently, even when we're not on treatments. The fatigue seems to be a symptom of the cancer itself, so anything that causes more fatigue can really keep Karen down. There's also a chance of diarrhea, but we aren't too concerned with that since the pain meds tend to cause constipation. We'll have to wait to see how much the fatigue affects her, but overall it doesn't sound anywhere near as bad as any of the other treatments we've had so far. We were told it will likely take 5 to 10 treatments before start to notice any side effects.

The radiation simulation was Friday. They made a mold for her to lay in so that they can get her in the same position each time. They also gave her 3 tiny tattoos that they can use to help align the machines each time. When she points them out to you, you can see them, otherwise they are pretty much unnoticeable. Laying still for so long did get painful for her, but they assured us this was much longer than she would normally be laying there. The reason the simulation takes so long is because they are taking CT scans to use when planning out the treatment.

No MATCH

The genetic testing results came in and they were unable to find any match for a targeted drug, so it looks like we're out of that clinical trial. The pills for chemotherapy drug Lonsurf - pronounced "lawn surf" - had actually already been delivered Friday, so Karen was able to start on them immediately. We had an appointment last week where we went over what to expect when taking Lonsurf. The typical side effects are: diarrhoea, nausea, vomiting, fatigue, a decrease in white and red blood cells, and a decrease in platelets. Theses side effects actually sound kind of mild compared to what we've dealt with before. There's no mention of anything like sensitivity to cold, aches, chills, or hand-foot syndrome. All of which have been hard on Karen when dealing with chemo previously. The Lonsurf is taken twice a day, 5 days on and then 2 days off, for two weeks, and then there's a break for two weeks.

Chemotherapy's never really been able to shrink Karen's cancer. The best we've done is to stall or slow down the growth. This means this new drug is also unlikely to shrink these already painful growths. As such, the palliative team has suggested we use radiation therapy on these areas. One of them is so near the surface that it should be possible to treat it with almost no side effects in just one session of radiation. It was also suggested that we don't have to worry about any major side effects since these spots are close to the surface. Seeing as how either just dealing with the pain or having another surgery were the only other options we had considered, Karen was quite excited by this prospect. We'll have one appointment to go over the procedure and its possible side effects, and if we're still interested, a "simulation" where they measure everything out more exactly.

The Waiting Game

We decided to go ahead with the NCI-MATCH clinical trial, so last Friday Karen had an ultrasound guided needle biopsy done on one of the masses in her abdomin. Currently, the chemotherapy you receive is based on the origin of the cancer; so colon cancer patients get different chemo than lung cancer patients, even if the colon cancer spreads to the lungs. In this clinical trial the cancer is gene sequenced and a matching treatment is picked out based on specific DNA mutations or abnormalities. While immunotherapy treatments - such as the one in the previous trial - are an idealistic future treatment for cancer, this sort of targeted chemotherapy treatment seems to be a more immediately reachable goal. That said, there are currently only 24 precision drugs that target different genetic abnormalities in the cancer, and most people won't find a match for their cancer. I forget the exact range we were given, but the likelihood they'll line up a match was somewhere in the range of 15 to 30 percent.

You have to be off any other treatments for 4 weeks before you can start a clinical trial and the biopsy can take 2 to 6 weeks to be sequenced. So we just have to wait. Unfortunately the cancer won't. The masses on Karen's abdominal walls have continued to grow quickly. There's a lot of pain associated with these growths due to their location on or around the muscles near the surface of her abdomen. Karen's recently gone up on her pain medication and is now on the highest doses of painkillers she's even been on at home outside of recovering from the our last surgery for which we got sent home early. As such, we had a visit with the oncologist Wednesday to pick out the treatment we will go with if no match is found, and have begun the approval process through the insurance. It's a new chemotherapy drug called Lonsurf, which has only recently been approved for the treatment of colon cancer.

Since the last update Karen's been struggling emotionally with the cancer's seemingly increased rate of growth. Up until now the cancer has been pretty slow growing, with only millimeters of growth between scans, but with this last scan we saw centimeters of growth in areas in just two months. And now she has these painful lumps that don't even allow her to roll over in bed without being reminded of the cancer. While she'll feel like talking about it occasionally, most of the time she doesn't. It really bothers her when someone asks her about the cancer, and I've noticed her almostly completely stop talking to people simply because they bring up the cancer too often. This is partially my fault as I haven't been updating the blog as often as I should, but I guess I don't like thinking about it either.

Results

Karen had thought about pulling an all nighter to get some projects done that she had been interested in doing, but we only stayed up a little later than normal. This turned out to be a decent decision because her treatments have been canceled and she is getting another week off. The scans have shown growth of several millimeters for many of the implants, along with new implants that weren't seen before. This has been passed off as "no significant changes" or sometimes even as "stable" in the past, but it's enough to tell the researchers the treatments likely aren't working. There are some cases where inflammation due to an immune response makes it appear as if the cancer were growing, but they don't feel that's the case here.

Karen asked and she is still the only person to undertake this clinical trial at Mayo. But even if others were on it I don't know if they would have been able to tell us if it were working for anyone else. The oncologist says going back on FOLFIRI is an option, but Karen feels strongly opposed to that idea. The oncologist believes the cancer was growing more slowly on while Karen was on traditional chemotherapy. I suppose there's even a chance things were worse because we were on this trial - a possibility I had never considered.

Directly afterwards I asked Karen how she felt, and she said fine, "but maybe it hasn't sunk in yet." Which is what's happened more as the day progressed. By evening she had become quite upset. Not to the point of tears, but to the point where it's certainly affecting her mood. She talked about it a little, and that helped. But what seemed to help the most was getting back to work on her projects. I guess the distraction is good.

There are other clinical trials we may be interested in. Right now the type of chemotherapy administered to cancer patients is based on the origin of the cancer. So Karen gets chemotherapy treatments that have historically performed best against colon cancer. This is FOLFOX and FOLFIRI. However, there are studies underway to use genetic testing on the cancer to catalog the gene mutations and choose a chemotherapy based on the specific genetics of the cancer. There is good reason to believe this is the better approach, but there still isn't a lot of data on it. One of the clinical trials Karen might qualify for is this sort of treatment. They'd do a fine-needle aspiration on one of the nodules suspected to be cancer, and map out it's dna. Based on the finding we'd try a specific chemotherapy treatment that's expected to perform better on Karen's particular variant of cancer.

Opposite Week

Last time Karen got a week off she had a good amount of energy and was actually quite active. This time around was nearly the opposite; she slept a lot and felt off most of the week. She even vomited Thursday. She managed to go two cycles of the clinical trial without puking once and now it happens on her week off. We figure she must have been fighting something all week because she didn't start to feel better until late Friday.

As I mentioned before, the CAT scan was Friday, but we won't be able to find out anything about the results until we see the oncologist Monday morning. I know we shouldn't expect much, this being a stage 1 trial, on the other hand it's hard not to get your hopes up. We talked about it briefly, and she says she doesn't have expectations one way or the other, nonetheless I'm worried she'll be overly disappointed if the scan doesn't show improvement. She doesn't seem to be nervous or thinking about it much, but she's also been keeping herself busy with things she wasn't able to do earlier in the week.

A Short Week

As I mentioned before, we would be getting Labor day off. This means Karen's first injection this week wouldn't be until Wednesday. Despite the side effects diminishing with each injection, when Karen started the second cycle her first injection was nearly as bad as the very first. So I was a bit concerned that with Monday off - making it 5 days between injections - that Wednesday's injection would be tough on her as well. Unfortunately, that did turn out to be the case. Which also meant Friday's injection was a bit rough as well. And some of the symptoms, particularly the painful sensations from air blowing over her skin, seems to have come back Sunday evening. Even on Monday she seemed overly fatigued. Karen's bloodwork hasn't shown the same drop in white blood cell count we saw the first cycle. This is almost certainly due to the extra day off, and quite possibly tied to the severity of her symptoms.

We have bloodwork and a CAT scan scheduled for Friday, but we won't find out if the injections have been working until Monday. Since it's easier to cancel an appointment than to try and schedule one at the last minute, they've already got Karen scheduled for her third cycle of injections. While on chemotherapy we never got scheduled more than a week ahead of time, but we seem to be scheduled a whole month ahead while on clinical trials. I assume this is to make sure they don't miss a treatment due to scheduling, but it feels strange to click on your appointment list and see it scheduled out all the way through October 7th.

The Second Second Week

This was the second week of the Karen's second cycle in the clinical trial. Much like the previous week, this week went very similar to that of the first cycle. Most of the symptoms seem to be slightly less severe than the first time around. For example, she still gets headaches but they don't seem to be triggering migraines, so she's better able to use her phone for texts. However, it turns out she's even more sleepy and fatigued this cycle. Wednesday's injection was the worst in regards to this. She went to bed around her usual time, maybe a bit early, but slept for around 20 hours. Then, after being up a few hours, slept again until Friday morning. I was starting to get quite concerned, but Friday's injection was much more typical.

At the end of the first week we got to talk to our research contact and one of the things that came up was the early appointments. He said there's no problem moving them further into the day. We thought noon would make things easier for us and they adjusted all of our future appointments accordingly. We were quite happy with the change and thought it would make getting to the appointments much easier on us. And it did, but it had one unintended side effect. During the first cycle, Karen would be fine the evening before her next injection, but now, with her injections happening 3 to 4 hours later in the day, she isn't recovering completely until bedtime. I'm not sure if the extra sleeping is related this schedule change, or if it's just compounding the issue. Karen says that for now she still prefers it later in the day - and compared to those 6:30am appointments across town, who wouldn't? - but maybe we'll aim for something in between for the next cycle.

Similar Week

The first week of this cycle was very similar to the first week of the first cycle. The muscle, bone, joint pains that seem to come from a sensitivity to a breeze have been less, but then again we've also been using ibuprofen from the start, and it does seem to help with such symptoms. There was less diarrhea and loose stools, but Karen didn't mind those side effects compared to the constipation she's been dealing with since her ostomy reversal. Overall, this first weeks' symptoms seems to be only slightly better than last time around. If I had to quantify it I'd say the side effects are maybe 15% to 20% less severe. And I'm not sure if it's not just because we are medicating better. Karen and I were also wondering if the severity of the side effects are in some way related to her white blood cell count - like how mosquito bites affect you less when your white blood cell count is lower.

First Injection, Again

Karen's first injection of this cycle started out well. She slept through what is usually the worst of it, but around 7 or 8pm she started to feel bad. And after I had just been saying how well she was doing and how smoothly things were going. I think part of it is that she was asleep and didn't take her acetaminophen and ibuprofen. I was worried that if I woke her up to take her pills, she'd be awake when her symptoms were at their worst. But it seems like it's going to be one of those things that are easier to stay ahead of than to try and catch up on later.

She said it was nearly as bad as her very first injection of the trial. There wasn't any nesaea this time though. This is most likely due to the olanzapine she takes the night before. But she ended up with a migraine around 8pm and had to take something for it. Her headaches seem to be connected to the neck pain and stiffness/tightness that she gets. Along with that she was also getting aches and pains like the first time around, and had a lot of sensitivity to moving air. I am still really puzzled by that one.

The symptoms improved over time, but slowly. I don't know if she just had a delayed reaction to this injection, or if it just took longer for things to clear up compared to the first time around. She didn't even seem to be feeling very well when she went to bed the second night, but seemed back to normal this morning. Of course she's pretty exhausted and worn out from the whole ordeal, but that's been a pretty consistent reaction to these injections.

The Next Cycle

On the days we have labs beforehand, the appointments start around 6:30 in the morning. So we have to leave before 6 to get there on time - maybe even earlier depending on traffic. Which means sometimes we have to get up around 5. And we've gotten use to staying up late this past week. So Karen was having a bit of trouble staying awake to talk to the doctors. Which I was worried might concern them, however, her blood work shows an increase in both white blood cell and platelet counts. They're lower than they should be, but they've gone up since her last lab work two weeks ago, and are high enough to start the next cycle. So Karen was OK'ed to start the next cycle of the clinical trial. She's mostly slept through it so far, which I think makes it easier on her.

For the most part, I have been rather impressed with the care we've been getting with Mayo Clinic and their attention to detail. But there's something about this clinical trial that just feels a bit off. I'm not sure if the research coordinators are only working for Mayo, and exactly how they're connected to the outside research. But sometimes it doesn't seem to be on the same level of professionalism that we've gotten use to at Mayo Clinic.

Today they had a calendar they asked Karen to help fill out, listing which side effects she had when. It was a bit odd to do, not only after our week off, but without having asked us to make notes or even suggesting we mentally note what happened which times. I probably could have pulled up the blog but the researcher seemed to be in quite a hurry and didn't seem all that interested in specifics. Afterwards, even without looking anything up, Karen was remembering things that had happened at different times, but what were we to do then? Perhaps they aren't as interested in side effects at this stage of the trial, but it felt unprofessional. Also, everyone is brushing off this unusual sensitivity to air that Karen often gets with the injection. It reminds me a little of the cold sensitivity she would get while on FOLFOX. I wonder if this will become a bigger issue if this trial stretches into the winter months.

Another thing that concerns me is the eye exams they administer at the start of the cycle. They have had to call us back after our appointment both times, as they had forgotten the eye exam. The excuse is that it's not a usually part of a clinical trial's testing. But that makes me a little nervous as to why someone thinks it's necessary here. At the very beginning, before we even signed any consent forms, I asked the research team why it's part of the trial and if there was any risk of blindness. They said they had no reason for concern, and that the only reason it was being done is because the sponsor wanted it done. The other thing is no one seems confident when they're doing the eye exam. The first time around I believe we had a visit scheduled with an ophthalmologist, but it was canceled and a researcher ended up taking a quick look at Karen's eyes. Today they asked the oncologist to look and he said he was unfamiliar with the particular type of ophthalmoscope that was available, but took a look anyway. Perhaps they are trying to save us some time or money, but I think I would have prefered the ophthalmologist visits.

Looking at the schedule, it appears there are no 7 hour observation periods this cycle. All injections have 2 hour appointments. They give her the acetaminophen (Tylenol) 30 minutes before the injection, and then observe her for an hour after the shots. That leaves some room for preparing the injection or unexpected delays, which seem to happen quite regularly. In theory we should be able to get in and out in 1.5 hours, but 2 hours is fairly typical. The other thing I noticed about the schedule is that we have Labor Day off. I realize the entire cancer clinic is closed on this day, but something about it still rubs me the wrong way. We had asked if Karen had to come in for 7 hours on her birthday, but were told we had to follow the clinical trial's schedule. This is a potential life extending or life saving drug, so the explanation seemed quite reasonable, but now with Labor Day off... I have to wonder if it was really necessary to have her in on her birthday, and if so, if the 7 hour day couldn't have been swapped with a different 2 hour day.

Our Week Off

Karen had been wanting to visit some family down in Tucson that hadn't been able to make it up to see us here in Phoenix. She enjoys seeing her nephews and nieces in particular. I think spending her birthday in observation made her more feel more isolated than usual, even if we probably wouldn't have done much otherwise.

We spent two days - a little more than 24 hours - visiting in Tucson. She had said she'd be ok putting a mask on, but when it came down to it she opted not to. While part of the decision was certainly because she was feeling better, I think another part of it was not wanting to be remembered as being sick. In the end we had a good time, and she did remarkably well. A lot of times in the past, when we've traveled somewhere she's needed a lot of rest. And she did rest quite a bit once we got back, but I don't remember her doing this well in a long time.

After sleeping a bit heavily for the next day or so, she rebounded quite well. I don't remember the last time there was a week where she was this active. I wonder now if she felt compelled to do more on her week off knowing it'd be another month until she'd feel that well and have that much free time again. We did push it a little near the end of the week, going out a little more and staying up a bit late. Either way, it was a very happy week for us.

Last Injection for the Cycle

Friday's injection went smoothly. Perhaps the smoothest yet. Karen still got some flu like symptoms, but it didn't seem to be much more than that bleh feeling you get when you're sick. The difference between the first shot and this last one is huge. The thing we're wondering now is how rough the injection will be after our week off.

We had more testing done Thursday, which mirrored the testing we had the day after the first injection. A lot of these blood samples taken go directly to the researchers, and we never see their results. None of the test results from Wednesday or Thursday were available to us. We were hoping one of Friday's tests would at least give us Karen's white blood cell count so we'd know how careful to be on our week off, but that didn't turn out to be the case. We even went as far as asking if they could do a blood test that would tell us the white blood cell count, but no one wanted to run one. The researcher working with Mayo said we should expect the white blood cell count to rebound quickly, and that he didn't think the drop was necessarily from the injections. The oncologist said the opposite; there's no reason to expect different results Friday than we got Monday, as nothing had changed, and to just follow the usual precautions for a low neutrophil count: wear a mask when visiting family, avoid crowded public locations, and wash your hands frequently.

Birthday Day Injection

Today's clinical trial injection is designed to mirror the first day's injection in terms of tests. That means about an hour of testing before the injection, and then 7 hours of observation along with frequent testing of vitals and blood samples. When we arrived at Mayo Clinic the staff gave Karen a tiara to wear, and the room had Happy Birthday decorations up. A little later a bunch of the staff came by with a fancy looking chocolate cupcake with butter creamcheese frosting from Gigi's Cupcakes - the frosting's as tall as the cupcake itself - and a Happy Birthday card signed by everyone, then sang happy birthday to her. The room we get is always a private room with a bed in it Karen can lay down in. The room has a TV with hundreds of channels, so there's always something to watch. Today we have 6 different channels of Olympics for Karen to bounce between, which keeps things interesting.

For the third week in a row Monday's injection was hard on Karen. It's the same injection each time, so we're not exactly sure what's going on. I think the extra time off makes the body react a little more strongly to the injection. The shots leave Karen pretty worn out, so another possibility could be that the Monday's sleepiness makes the Wednesday injection easier to sleep through, and Wednesday's does the same for Friday. Karen missed breakfast on Monday, so her theory is that perhaps she's just missing breakfast on Mondays and it hits her harder if she hasn't eaten. Either way she continues to recover quicker from the injections, and was feeling pretty good Tuesday.

Karen's platelets have continued to test way below reference range, and now, Monday's blood work shows there's been a sudden drop in her white blood cell count. They've recommended we avoid places with a lot of people, and that if we do go out in public, to wear a mask. We only have one more treatment before Karen's week off, so hopefully her white blood cell count recovers quickly so we can get out and do things.

Second Week of the Trial

Monday's injection seemed a little rougher for Karen than Friday's. Maybe it was the extra day off, or maybe she just felt it a bit more because she was less drowsy than she had been the previous week. Karen tested out her theory by taking both a decongestant and using a nasal spray, but neither helped with the headaches. In fact, it got so bad she had to take migraine medication again. So maybe it isn't related to her sinuses after all?

Wednesday we got to see our oncologist before the injection. We talked about the side effects, and he said Karen's sensitivity to the wind was a normal part of the flu like immune response. However, it's not something Karen or I have ever experienced with a flu before. While he's fluent in English the doctor has a slight accent, so I thought it might be a language barrier. I made a second attempt to describe the side effect using different words and phrases, but he insisted it was a normal flu like symptom. He said adding ibuprofen to our regimen would help. A couple months back, we met with someone filling in for our usual palliative care doctor. He suggested Karen stopped taking ibuprofen for pain, even if it meant using more oxycodone, because the ibuprofen had the potential to cause liver problems in the long run. It seems everyone else is fine with Karen taking ibuprofen; so we've added that back into our regimen and it's made a big difference. And not only with the chills, headaches, etc, but with the quite intense bone, joint, and muscle pain caused by a sensitivity to airflow. This made Wednesday's injection the easiest to deal with yet.

And following that, Friday seemed to go slightly better than Wednesday. It seems that, as we had hoped, the symptoms seem to be lessening with each injection. Not by a lot, but certainly by some. This is such a relief. In our experience with chemotherapy, the symptoms worsened with each treatment, and it really makes you dread going in for the next one. This is much easier to deal with.

At the start of the week we had some bloodwork done. The only thing that seems to be getting worse as time goes on is Karen's platelet count. It just keep dropping. However, this seemed to start the week before we started the clinical trial. I'm not sure if it was just a fluke right before we started the trial and then the injections have continued this trend, or if it's something else unrelated to the trial. In contrast, Karen's white blood cell count seems to have gone up after the first week. I don't know if this is the body's natural response to these injections and the flu like symptoms they cause, but I'm quietly hoping this means something is working.

We have one more week of treatments, then we have a week off. To mirror the first 7 hour observation period, Karen will have another 7 hour observation period - on her birthday of all days - where they will repeat all the testing they did with that first injection. After the third week, we get one week off, which completes a "cycle" of treatment. Then after two cycles, Karen will get another CAT scan and we'll see if the injections have had any noticeable effect on the cancer.

Third Injection

Friday's injection went more or less the same as the previous two injections had. The fever and headaches are constant and last for about a day and a half. Karen suspects the neckaches are related to the headaches. And she thinks by sleeping so much, things might not be draining like they usually do when her allergies act up, which might be causing the headaches. By Saturday night everything had cleared up. I'm glad the headaches and fever aren't lasting longer each time. I think it just seemed like it was because the previous shot was several hours later in the morning than the first.

what Karen's been describing as joint and muscle pain, doesn't seem to be improving between injections. She says it's hard to describe and isn't actually sure if it's muscles or joints or bones, or what. She says it's just a pain inside. It also mostly affects her limbs, and does seem to be triggered by airflow. I noticed when the AC was on she was moaning from the pain and then when it turned off it started to get better, only to worsen when it turned on again. I thought maybe it was cold sensitivity like she had with the oxaliplatin had done during her first round of chemo, but she says it seems different. She does agree it's somehow tied to air flow, but probably not the temperature.

Karen didn't take the Zofran (ondansetron) for nausea preemptively this time around, but when she started to get a little nauseous she took it and everything was fine. So the olanzapine the night before with the Zofran the day of seems to be just the right amount of enough antiemetic to prevent the overpowering nausea she experienced the first time around. So at least we have that figured out. She also thinks a decongestant might have helped with the headache and neckache she experiences, but she took it near the end of the side effects so we'll try it sooner next time to see if it is indeed helping.

Second Injection

Karen's second injection was Wednesday. The sleepiness seems to be one of the hardest thing to shake when it comes to these new injections. She slept through most of Wednesday, and as such, seemed to sleep through the worst part of it. She didn't have the whole-body joint and muscle pains, although she did get some pains in her hands and neck. Karen thinks the joint and muscle aches she had Monday might be related to the chills she experienced at the same time, and since she was covered so well in bed at home, she didn't get them this time. I think the bigger part of it was just how deeply she was sleeping.

The headaches are another thing that really seem to drag on, even through most of Thursday. I'm not sure if it's because she's prone to migraines, but this is certainly a big source of discomfort. I'm concerned they may start to reach from one injection to the next. She's still getting fevers the day of the injection, and I thought the headaches may be tied to that. This one seemed to come on later in the day Wednesday and didn't break until after 3pm the next day.

That said, we managed the nausea perfectly this time around, despite the fact it was so severe on Monday. There's a pill she takes the night before that helps immensely. The drug is olanzapine, and it's actually an antipsychotic, but given at extremely low doses it helps prevent nausea. She took some Zofran (ondansetron) preemptively after the injection, and managed to go the entire day without nausea.

I guess I'll also mention that since Monday Karen's been having loose stools. This is different from straight out diarrhea and tends to be more regular. She goes once, maybe twice a day. It isn't a big concern for her, especially as she had been struggling a little with constipation before we started this trial. I asked her if she'd rather have loose stools or constipation, and she said loose stools.

She does seem to be feeling close to 100% the night before the next injection. Hopefully we can find some medication to help minimize the other side effects, but we don't see anyone special to help manage the symptoms like we did when we were on chemotherapy. We still have our treasure trove of pills from chemo, and we can always call and ask if it's ok to take something, but I liked sitting down with someone and talking about the symptoms before a treatment. It's something I'm looking into.

I realize it's Friday now, and she has gotten her third injection, but it's easier to say how things went after the fact, rather than post a constant stream of updates. If Karen did develop a dangerous side effect, I would certainly post about it right away, or if things really went south, I'd even call or text friends and family right away. Headaches make her sensitive to light, and the light of her phone - especially in a dark room - can bother her as well. Add in the hand cramps and pains and she might have a tough time responding to texts from friends and family, but please don't be offended or worried if you don't hear back from her right away on the days of her injections: Mondays, Wednesdays, and Fridays.

First Injection

On Monday Karen got her first injection of the drug at about 8:45am. Flu like symptoms seem to be common with these immune system oriented treatments. So around 1pm, over 4 hours after the injection, Karen started getting these flu like symptoms. It started with a headache and some neck cramping, followed by a fever, chills, and nausea shortly after that. And in another 15 minutes all of her muscles were shaky and cramping, along with miscellaneous aches and pains. All of this triggered a migraine, but she had her migraine medication with her and they OK'ed the use of it. She had to take several different medications to help with the nausea. They give her Tylenol about an hour before the shot, so she was able to take more as it wore off. The worst of it seemed to pass in an hour, and she slowly recovered over the day. She still had a small headache in the evening along with a little nausea, but after taking some more medication she seemed quite comfortable and was able to eat. A small dull headache seemed to follow her halfway into the following day, but by the end of the second day, the only symptom that persisted was sleepiness.

Today's treatment starts later in the day, perhaps because we don't have to be around so long for observation. Also, with the shorter observation period we will be back home before the symptoms hit. Hopefully, she'll be more comfortable at home. I believe we have all the medications they gave her Monday, at home already, from past rounds of chemo. I'm a little concerned her reaction may be worse this time around since the side effects of chemotherapy were worse the second time around. However, the nurse has suggested the symptoms might not be as bad. So I'm not sure what to expect.

Clinical Trial

We saw the oncologist in May, but Karen had just gotten stitches, so the oncologist said she wasn't ready for more chemo. He did however say that when she was ready, there were a few clinical trials we might be interested in. We saw the oncologist again in June, a month later, but this time it was Karen who said she wasn't ready. We set things up to start a clinical trial in July, but when July rolled around and we saw the oncologist, we found out the trial had been put on hold. So we had to find another one. That trial starts today.

Both trials involve "activating" the immune system. This one in particular, studying recombinant super‑compound interferon (rSIFN‑co), hopes to enhance the immune response to cancer cells by activating certain white blood cells. After all we've been through, it seems obvious to us that this type of approach will be the future of cancer treatment. There's already been some amazing breakthroughs with other types of cancer using such approaches. It's just such a natural approach to fighting cancer.

This trial is only in phase 1. That means they are evaluating the safety and identifying the side effects of the treatment, all while trying to determine a safe dosage range. As such, we had to have a ton of tests done ahead of time, checking everything from Karen's eyes to her heart. We have 7 hours of observation today following the injection, with more blood tests throughout the day. Then there's more testing in 24 and then 48 hours. If all is good after the testing on Wednesday, there's another injection followed by 2 hours of observation. This will continue Mondays, Wednesdays, and Fridays. It sounds like the observation period will continue to decrease over time as they are more comfortable that Karen won't have an extreme reaction.

Reopened

Last night, while Karen was sleeping, she rolled over onto her side and her incision opened up in two places. Lots of puss, fluid, and blood came out. There wasn't any pain associated with the mess, and the openings themselves weren't pulling apart like they had done previously, but we were still alarmed. It had opened right along the incision in two places. One was just less than a centimeter long and the other about 2 centimeters. We called Mayo first thing in the morning and once again they got us in the same day.

At first there was talk of opening the incision back up to make sure it was entirely drained, but in the end they decided to just drain what they could, stitch it shut, and send us home with an antibiotic (Augmentin). Despite two syringes of lidocaine, Karen still had an incredibly tough time with the pain as they put the stitches in. She was shaking (convulsing?) at one point, even to the points of getting cramps in her arms. We figured they'd probably want to do something, and had thought about applying the lidocaine patches we had previously had so much luck with, but didn't, which turned out to be a big mistake. Karen took some oxycodone directly after the stitching and we sat for about 20 to 30 minutes before heading out. We have a follow up in a week.

On the bright side. Karen has been awake a lot more since dropping down to lower doses of the pain patches. She's awake at least as much now as she was back at the beginning of the year, maybe even more so, which is quite encouraging.

Month At Home

Karen has been doing fine since her stitches were removed. Everything has held together just fine, and there's no sign of trouble. She's been sleeping a lot still. Some day it seems she's only up 4 to 6 hours. I am a little concerned, but she's been on such heavy pain meds, I'm leaning towards those as the culprit. She does seem to be awake more often as we decrease the dose, just not by as much as I would have expected.

Karen was on a 25 mcg/hr fentanyl patch back before the surgery in February, and is only today dropping back down to 25 mcg. Even as far back as November, 25 mcg/h wasn't enough to sufficiently control her pain. She had tried the next step up, 37.5 mcg, but found she was sleeping most of the day and opted to be in a bit of pain rather sleep her days away. As the pain continued to slowly increase, she tried the 37.5 mcg on and off. This is actually a major part of what triggered the oncologist's suggestion back in December to see the surgeon about having the mass removed. On April 1st she left the hospital using a 100 mcg/hr fentanyl patch, and a lot of break through. So progress has certainly been made in returning to 25 mcg. Hopefully as we return to these lower doses she'll get back most of her day.

The only other thing worth mentioning is how much more careful we have to be with gluten now that Karen's using the full length of her intestines. While she had her ostomy we could get away with so much. I guess because the food leaves the body so quickly? Whatever the reason, we've gotten a bit spoiled, being able to cheat with wheat products without much of a reaction. Going back to a stricter diet is a bit disappointing and frustrating. We had hoped that part of the reason she had to have such a strict diet before the ostomy was due to the cancer that had been removed from her colon, and thought maybe things had eased up for good. Now that her ostomy is reversed, it would appear that isn't the case.

Stitches Out

We went in yesterday and had the stitches removed. Everything is healing really well, and the stitches came out cleanly. Since they were such large stitches, he put Betadine on the wound after removing them and told us to wait 24 hours before applying dermabond. Karen's pain level is way down, and we're decreasing the dosage of the pain patches she's on.

Week At Home

We've both been pretty happy with Karen's release the day of the surgery. We already had a prescription for fentanyl patches and another for oxycodone - to help with breakthrough pain - but the surgeon had also prescribed a 5% lidocaine patch. It's a local anesthetic, which means it just affects the area it's applied to. He had said to cut strips and put it on either side of the wound. He also gave us a prescription for antibiotics.

We tried to get them filled at the hospital pharmacy before we left, but some issue with the insurance was stopping the lidocaine patches from being filled. I assumed we needed a preauthorization and left a message with the doctor. Remarkably, they found us in the hospital before we were completely discharged, and said that for some reason it's almost never covered. After all the delays with wound VAC, I was content paying out of pocket to have the painkiller now. It was going to be almost $100 for 10 patches though, and one of the doctors suggested we wait until tomorrow to see if Karen had $100 worth of pain.

The day after was actually quite painful for Karen. She was using the breakthrough medication as often as she could, which was every hour. I am willing to bet, if we had been in the hospital, they would have had her on a pain pump administering dilaudid. Karen quickly decided it was more than $100 of pain. I called a couple pharmacies to check stock and compare prices. Walgreens suggested I check GoodRx.com. The site not only compares drug prices at different pharmacies, but gives you discounts on those drugs. We managed to fill the prescription in about an hour for only $34.14. There were no charges to use the site or get the discount. What a great find. We've never had a prescription not covered before, and with a couple days of back and forth we probably could have got it, but I have no regrets in simply paying out of pocket to have it immediately, especially at this discount rate.

It made an amazing difference for Karen, and she was able to back off the oxycodone immediately. The patch is 12 hours on, and then 12 hours off. Karen was feeling so well on Tuesday that we forgot to put the lidocaine patches back on after being off for 12 hours, and did she start to hurt again! I'm surprised they haven't used this with her at the hospital before. It probably wouldn't have done anything for the huge HIPEC surgery she had had, but it probably would have helped with the previous surgery, when the mesh was put in. At least we know to ask for it in the future.

We had the one week follow up today. With such large caliber sutures, the body is much more likely to "reject" them, and "spit" them out. This is also more likely to occur in an area that's had a lot of trauma. So the idea was to take them out after just one week, and switch to dermabond. Our concern has always been that removing them so soon would allow the wound to open up again. On our visit, the surgeon said the tissue around the stitches looked quite healthy, and if we're up for leaving them in longer we can check on them again Tuesday. He removed the JP drain, which was the most irritating thing for Karen at this point. It's connected through a hole in the skin a couple inches to the left of the wound, and is held in place by stitches of it's own. So she's happy that's out now. Everything is looking good so far.

We're home!

They waited to discharge Karen until they could get her pain to a reasonable level. They gave us a typed up list of instructions and then sent us on our way.

Operation Complete

I just spoke to the surgeon and he said everything went well. They took the mesh out and cleaned everything out. He said they did have to remove some skin so the wound will appear to be lower, and there will be more tension in the area. This means it's very important that she not reach up (or down) for anything. We're to minimize stretching. He also said they used heavy sutures this time, and they shouldn't stay in for more than a week. So we'll have to come back next Friday to have the stitches removed and replaced with our friend dermabond. He says as long as there are no unforeseen complications she should be going home today, and gave me directions for caring for the wound until then. Things like no showering until Sunday, and to keep the stitches covered with bacitracin, as they are a possible source of infection.

Into Surgery

They've taken her back for surgery. We spoke to the surgeon beforehand and he said with the surgery being so early, he'd like to see her go home by the end of the day if everything is going well. This is a surprise to us as we were initially told 2 to 3 days. The surgery itself should only be about an hour, but he said to add half an hour for trivial things like transportation.

Still On For Surgery Tomorrow

Check in is at 5:30am. Now that we've finally got the VAC, we were really hoping they'd give the skin more to heal before going into surgery. But they don't want to delay removing the infected mesh any longer, and say they can just cut away any damaged tissue.

Another Week Gone By

Karen only just got the wound VAC late today. We typically have very few issues with health insurance, but every now and then, to authorize coverage they want to hear something very specific from the doctor. If we had known it would take this long, we would have tried to pay out of pocket and just fought the insurance over it later. They did finally authorize the wound VAC Friday, but the device had to be shipped from the manufacturer, and it was too late in the day to ship it before the weekend. So it wasn't shipped until Monday, and didn't arrive until today.

The ostomy bag they had set us up with last Tuesday turned out a bit disappointing. It didn't stop the wound from opening up more. I'm not sure why we thought that would do the trick if all the stitches and glue we've tried in the past hadn't worked. The wound also drains out of places that look healed, so it was also hard to position it in a way that would catch all the drainage. The wound VAC is a much wider seal, and even without the added health benefits, it helps immensely with the drainage. It would have saved us so much trouble over the past week. As it is, the surgery is only a few days off now.

The goal for the VAC was never to heal the wound closed. I don't think it was impossible, and that would have been great, but it really did seem the body wasn't going to allow it with the ongoing infection. The goal, rather, was to heal the skin around the wound so that it could be reused instead of removed during surgery. If it were helping, the surgery could have been pushed off to allow further healing. Now there probably won't be enough time before the surgery to make such a decision.

In the end it took a whole week to get the VAC. It might not have made any difference getting it earlier, but this is one of the few instances where I feel truly let down by the system. The doctor let the resident write up the order. The resident took too long doing it. Then the insurance wouldn't accept anything from a resident. After everything had been approved, rather than having one of the devices on hand, Mayo Clinic had to order it from the manufacturer. I can only imagine how frustrating this would be for someone losing a foot to an ulcer.

More Excitement

All of Karen's stitches have torn themselves out. The stitches themselves didn't break; you can still see the loops on one side of the wound, but the other half have been slowly tearing right through the skin. You can see the path they took on the way through to the other side. I thought about including a picture, but figured it might be too much. Some have big ugly paths that widen as if they went quickly taking more skin with it. And others have small narrow straight lines for paths, as if they slowly worked through. All but one stitch is left. Karen called yesterday to tell the surgeon the wound had opened back up again, and to see if he wanted to put more stitches in. But when he returned her call he said when he had seen the wound last week, he knew he couldn't put anymore stitches in. Same with staples, the skin just wouldn't hold them.

Karen felt we should just cut the little loops and pull the stitches out ourselves. I was a bit hesitant, but agreed to help. I was mostly worried someone would give us grief about doing it ourselves, so I took some pictures first as proof they weren't holding on to anything. They were just loops on one side of the wound, dangling there. It went well, but after a day of thinking about it, and after seeing the wound so close up, I didn't feel as if the doctor had realized how much the wound had changed. It's a horizontal cut, but the distance of the vertical opening was probably an inch across. The only time I had seen it this wide before was in the hospital when Karen was swollen up like a balloon. The mesh was also folding up on itself; it reminded me of brain tissue. I called this morning and they agreed to see us. The surgeon took a look at the wound and said it was almost as if the body was trying to force the mesh out. Then he brought up his phone and said, "Would you be available for surgery... this Thursday?"

He said it's a full day of surgeries, so he would have to fit us in later in the evening, but we needed to do something. Of course we said we were free and willing. He said he would have to remove a lot of skin, and it would be an even tighter stitch. He paused, thinking, and said if we couldn't come up with something, then we'll have to do the surgery as soon as possible. He had a brief discussion with another doctor and he stumbled upon the idea of using a Wound VAC to help heal the wound. VAC stands for Vacuum Assisted Closure, which sounds a bit rough, but actually provides quite a few benefits. One of which is drawing blood flow to the area for faster healing. It typically takes two to three days for the insurance company to OK such a device, so he brought in a wound nurse and we came up with a temporary solution.

We're now using an ostomy bag around the wound until we get the prior authorization from the insurance company for the VAC. This will hold the wound together preventing it from opening more, and it also catches all the drainage Karen's been having. And there's been so much drainage. With an open wound the JP drain isn't able to hold suction. We've been changing the bandage every four or five hours when awake, and it's completely saturated. Since the catheter wasn't helping much, and now with the temporary solution and upcoming Wound VAC, they could remove the catheter. This made Karen happy. Every little tug or bump on the thing hurts. It's literally just a tube they poked in through the skin and pushed over to an area near the wound. The surgeon says if the VAC is working, he may even push the surgery back a bit further to allow the skin more time to heal.

Two Week Follow Up

Just last night Karen told me quite defeatedly that it didn't seem like anything was improving. Her digestion is returning to normal, but her pain level was about the same. If anything, the pain had gone up some. The wound keeps opening up despite being being restitched and reglued. And reglued, and reglued. Today we had our two week follow up appointment with the surgeon. He says the infection is what's causing the wound to repeatedly open, and said the team felt that no amount of stitching or gluing would keep the wound closed at this point. And if it won't close, it won't heal. The antibiotic irrigation can only do so much with an open wound, and new bacteria will continue to enter from the skin; even healthy skin is full of bacteria.

The solution seems to be another surgery to remove the mesh. Since the area around the mesh is also contaminated, they can't just replace the mesh with a new one. This would mean there'd be one surgery to remove the mesh, and a different surgery, after everything has healed, to place a new mesh. Then you have to hope the new one doesn't get infected. Since Karen already has so much scar tissue inside her, and due to other cancer related issues, they are trying to avoid surgery as much as possible, and will simply remove the mesh without plans to place a new one. As I mentioned before, the muscle that was removed with the cancer will never return. This means there will essentially be nothing between her intestines and her skin. After eating, her intestines could literally bulge out of her abdomen. This doesn't seem to be too much of a concern since the double mesh placement from before already looks like a bulge. It also means hernias will be a serious concern, and it's possible she will have to be put on activity restrictions for the rest of her life. The upside to all of the scar tissue building up around her intestines is that it may help hold everything in place. There are too many factors to know how much of a concern it will be. He said they will do an evaluation after the surgery to decide about activity restrictions.

The surgery has a tentative date of April 1st. If only it were an April Fools' joke. Karen feels although it's not the expected result, this extra time will give the wound another chance heal and close up on it's own. Oh, and the expected recovery time? 2 to 3 days.

One Week Later...

Today was the second time we've been back to Mayo Clinic since we were discharged Tuesday. Irrigating the wound with antibiotic has turned out to be more trouble than we expected. Three times a day we are suppose to "install" the antibiotic gentamicin through the catheter, let it sit for 30 minutes, and then drain it back out. The problem is the wound keeps leaking. After being stitched up, it was sealed airtight with a glue called Dermabond, but it just won't hold for long.

After leaving the hospital Karen had been going to the bathroom at least every hour or two, which not only meant a poor night's sleep and a zombie‑like Karen, but a lot of sitting and standing, and bending at the abdomen, which we believe to be the cause of the glue failure. The first of which was the day after being discharged. I called the next morning and they got us in by 9:30am. They peeled all the Dermabond off, put three new layers on, and sent us home with two more Dermabond applicators. This and a little New Skin got us through until last night when the whole thing started to peel off. Dermabond is only suppose to stick for 5 to 7 days, so at that point it's just doing what it's suppose to. We peeled off the glue and tried covering the wound with plastic wrap to see if that would hold the antibiotic in, but it didn't. So we called again this morning and once again they got us in right away.

The wound had started to pull apart again. The doctors say it's just the elasticity of the skin that's caused this and nothing to worry about. This time they took out all the old stitches and put in more much closer together and sealed it with Dermabond again. We're waiting 24 hours to resume the antibiotic irrigations. Hopefully it will hold up better this time around. Karen's finally starting to gain some normalcy as far as bathroom frequency goes, so that might help as well. She tried backing off the laxatives a couple days ago and got worried she was getting constipated, but right now she's only taking metamucil and things seem to be fairly regular. Her pain level has been pretty consistent, which is disappointing as we were hoping for that to have improved by now.

We have follow up appointments with both the surgeon and the palliative team next week. I expect things will have improved some by then. In the meantime we have home health nurses visiting a couple times a week to take Karen's blood pressure and check for fevers and such. She says it feels wasteful having someone come out to check on her, especially since these are things we could check ourselves, but I guess it's for the best.

Discharged

I got a chance to ask the doctors about the catheter they put in and what I overheard. They said "salvage" is the medical term for treating the infected mesh (or organ, or tissue) as opposed to replacing it. It doesn't imply impending doom, or have anything to do with the odds of success. I asked how likely it will be that this will save the the mesh. They said there really isn't very much data for this thing, and most of that data actually comes from Mayo Clinic. But there isn't enough of it to come up with something as specific as odds. They do, however, think it's reasonable to expect this to work. But even if the odds were stacked against us, the alternative to trying to salvage the mesh would be to replace it, and they said that's something they'd really like to avoid with Karen.

They showed us how to flush the wound with antibiotics, and set up home healthcare to visit us at home. They've also decided against the IV antibiotics they had originally planned, stating that Karen seemed to be in good health and showed no signs of the infection moving from the wound into the rest of her body; she hasn't even had a low grade fever in quite a while. Unfortunately, the antibiotic flush is something we're going to have to do three times a day for 30 days.

Karen's pain is still a bit elevated, around a 4 or 5 out of 10. When the palliative team visited this morning, I feel Karen was too focused on describing what she thought to be the source of the pain, than the way it was feeling. They told her increasing the dosage of the patch wouldn't help with the pulling from the catheter or pains from the sutures themselves. Since then Karen has mentioned a dull ache, which is certainly something that would have been helped by upping the patch dosage. Luckily they prescribed oral "breakthrough" pain medication she can use frequently if she needs to. And I'm also sure if we called the palliative team they would just up the dosage for us.

She's getting up less and less often at night, and seemed quite awake today. Food is still going through fine. And more normalcy seems to be returning to her life. Everyone seemed to think Karen was ready to head home. The last thing they were waiting on was a confirmation from the home healthcare provider before discharging us. They sent us home with a bunch of prescriptions, although most of them were just over were counter the treatments for constipation. We got discharged around 5pm, but with filling the new prescriptions and packing the car, we didn't make it home until after 7. It sure is a relief to be home though. It's a little scarey to think about how 2 to 3 days turned into 2 to 3 weeks.

Almost There

In the past when we asked about the wound being open we were told it would be allowed to heal via secondary intention. This means it's allowed to heal closed on it's own. This typically allows the wound to drain without trapping any infection inside, but tends to cause more scarring. They had begun to show us how to clean and bandage the wound for this kind of closure. The surgeon came around to check on Karen and we asked about something we were seeing through the wound. It had a strange vertical texture and no one else we had asked was able to tell us what it was with any certainty. It turns out, what we were seeing was the mesh they had placed. When the surgeon saw it he made a face where he pushes his lips up over the top row of teeth. The only time I have seen this expression before was in October 2014, right before he told me the cancer was something Karen wouldn't be able to beat. So I think it was a bad thing, but I don't know how bad. He said it should normally be covered with tissue, and he might put a few stitches in before we leave. He also said Karen's ready to move on to solid food again, and advanced her diet.

The palliative team lowered the dosage of Karen's fentanyl patch because she was doing so well with her pain level. They told us it's one of the least likely medications of it's class to cause constipation, but with her pain level being so low it's worth trying a lower dose. However, later in the day the surgeon surprised us by coming back with another doctor. Together they stitched the wound closed - which was more than a few stitches - and put a catheter in through the old JP drain site. They say the catheter will function like a JP drain, but it has a tertiary valve and they also intend to use it to flush antibiotics through the wound three times a day. As such, they also put glue over the stitches to make sure the wound was air tight. She will also be on IV antibiotics until it heals - which, luckily, we can do at home thanks to her power port. They numbed most of the area with lidocaine, but some spots just didn't seem to take to the local anesthesia, and parts of it the suturing were very painful for Karen. She said she felt like screaming. Her pain level has ranged from 4 to 6 out of 10 since then. It's particularly painful twisting to get out of bed. We've tried some additional oral meds, but if things haven't settled down by morning I'm sure they'll return the patch to its previous strength.

My biggest concern is the sudden change of plans with the wound and the urgency with which it happened. Before the surgery we were told the biggest risk is that of the mesh getting infected. And today we heard one doctor say that they hope to "salvage the mesh." The pharmacy had a hard time getting the order worked out for the antibiotic flush, and none of the nurses have seen this sort of thing before. Even the connector for the catheter had to be pieced together with supplies taken from the operating room, and part of that starting leaking a few hours ago. A nurse replaced the leaking part with some kind of lock connector we use with the power port. The whole thing feels very much thrown together. Still, they insist none of this will delay our release, so they must be at least somewhat confident that this is the right thing to do, even if it is somewhat uncommon.

With all the fluids yesterday Karen had been getting up to pee a lot during the night. I think poor sleep in a hospital is just par for the course. We had a couple good nights in there, but it's probably easier to just say when she is able to get a good night's rest, rather than when she isn't. We're curious about how much weight she's lost with all of this not‑eating she's been doing, but haven't been weighed in a while. All of her vitals have been fine though. Her heart rate is slightly elevated compared to what would be considered normal, but it's around what it was when we came in. I think this has been a thing since her earlier surgeries. I don't know if it's cancer related or what. Oh, and she's finally completely disconnected from all IVs, montors, etc. Her port is still accessed, but she isn't even attached to an IV pole. When she needs something via IV they just give it to through her port and then disconnect when done. We expect to go home tomorrow, Tuesday, or the day after at the latest.

Here We Go Again

Right after posting yesterday they decided Karen had become dehydrated. Her heart rate was up and they checked her inputs and outputs and noticed she had 2.5L loss for the day, and similar amounts the day before. So around midnight they gave her two liters of fluid via IV. Needless to say, she was up a bunch during the night to pee. So she started today out a bit tired, but did manage to catch up on sleep a bit throughout the day. They continued to give her a liter of fluid here and there throughout the day as well. Following their conclusion that she had become dehydrated, they discontinued several of the harsher constipation remedies, including magnesium citrate and the suppositories. I believe she's just on colace, MiraLAX and senna now. I had been a little concerned over what seemed to be a slowing down of her bowels, as she was only defecating a few times throughout the day. With the news of her dehydration and vast negative sums for ins and outs, I'm thinking her body is just getting use to bowel movements again and she is simply able to hold it longer.

Today's x-ray showed that she had passed the stool that had been backed up for so long. There wasn't any eureka moment when the stool passed, it must have broke up in chunks and snuck out in the diarrhea, or simply dissolved in with the rest. I think we may have been expecting a bit more of a change, or maybe even some semblance of a regular poop where she could say, "Hey, things are starting to go back to normal." Of course the biggest sign of her recovery is that her distension has continued to come down; the remaining distension could just be swelling from the surgery still.

Her heart rate is still slightly elevated from its norm, but her temperature and blood pressure are fine. The fluid coming from the wound looks more transparent and appears less and less like puss. The opening is still half an inch tall, and maybe two inches wide. I don't expect this is something we'll be able to notice a difference with from day to day. They told us it certainly won't be closed up before we go home, and a wound care nurse showed me how to bandage the wound. They'll show me again a couple times before we leave.

As part of our cautious return to food, they did an extended clamping trial of 6 hours. Again, this is where they disconnect the NG tube from suction and see how much they can take out of it after a set amount of time. If nothing much comes back, then things are working their way through the intestines. Karen passed the trial and the NG tube has come out. Her throat is still very irritated from the NG tube. Her voice is dry and scratchy sounding when she talks, like someone losing their voice. On the bright side, her diet has been switched from NPO to clear liquids. As you would expect she's quite happy about heading towards solid food again, as she has been really starving the past several days. This will be our third attempt to move back to solid food. We still have the stool softener and it's friends on board this time around, and she's taking much fewer pain medications now. Third time's a charm.

Still Waiting

Karen seems to be getting more sleep at night, and today she seemed to be doing somewhat better emotionally, but progress otherwise has been slow. She's still taking a lot of different things to help with bowel movements, but things are slowing down and she is going less often, which feels counterintuitive to me. When she does go, it's mostly diarrhea, and not solid stool. They saw stool backed up in the intestines when they did the x-ray yesterday. So what they think is happening is fluid is now able to go around the stool, but the stool itself is staying in place. This explains both why her stomach is somewhat less distended - fluid can go around - and why all that going doesn't seem to be helping anymore - the stool isn't moving. Everyone assumes it's just a matter of time, but how much time, no one can say.

Her wound is still open, but the skin looks a little loose in the area, perhaps a bit stretched from earlier distention? It's finally starting to look better to me though. Our concern was that we can see what appears to the mesh showing through the opening, which is almost a half inch tall by two inches across. A wound nurse came in and we got to ask her about it. She told us we could very well be seeing the mesh, but open wounds like this will pull closed on their own as they heal. She said they regularly deal with openings much larger than this. The reason they don't like to suture or staple them closed is that it can trap the fluids or even things from the air under the skin, and cause an abscess. She said the human body is pretty amazing and knows what it's doing.

Her pain level has been as low as a 1 or 2 on a scale of 0 to 10, and she even refused some scheduled pain medication this morning because she didn't feel she needed it. They've finally taken her off the PCA, as she hadn't been using it at all. Since they don't allow you to shower with the PCA, she was able to have her first real shower since she came into the hospital. Sure they do bed baths, but it's just not the same. Another advantage to being off the PCA is she doesn't have to wear the pulseox on her finger 24/7 anymore. This added freedom made it possible for us to go out to the little desert garden area out front, and sit on a bench under a tree by the fountain. All in all, I think she had a good day.

2 To 3 Days Minimum!

I only foresaw two possible outcomes; either Karen was up all night, or she had to have the NG tube for a couple days. Turns out it was both. Before they could even confirm placement of the NG tube - this is done with an x-ray - she pooped for the first time in almost 4 days. They did a "pull" from the NG tube to see how full her stomach was, and found it more than they could measure. They put her on suction to decompress her stomach, but what they had given her already earlier in the day seemed to kick in. She was up every 15 to 30 minutes until the early hours of the morning. I fell asleep around 4 or 5am, so I'm not sure how much longer she went on.

Things did slow down at some point and she managed to sleep a couple hours before the doctors started coming in. Despite the lack of sleep, she was feeling lots better. Her pain level had come down, and continued to drop throughout the day. It's sitting around a 2 or 3 out of 10 right now, and that's almost entirely because of the NG tube. Her stomach is much softer and a little less distended. The wound is still weeping a lot, and appears to be at least slightly held open by the distension. However, when the doctors press on her stomach they comment on how much softer it feels. They say she still has a lot to go though, and want her intestines as empty as possible before starting back on food again. The phrase they used was "as clean as someone going in for a colonoscopy."

So they have been giving her more of the same all day long, including the bowel prep magnesium citrate. But she seems to have slowed way down, and is only making small amounts of progress. They clamp the NG tube for 45 minutes to an hour after they give her pills - so she can absorb them - and for 2 hours after a bowel prep, but when they turn it back on, most of it comes back out. It's strange things seem to be slowing down again even though she's on the same stool softeners and such a before. Actually, it's probably a stronger regiment than the day before due to the bowl preps they're putting in the NG tube twice a day now. She's even getting less painkiller than before. Yesterday there was somewhere between 20 to 30 presses on her PCA pump, but today with her pain level falling so much, she's only pressed it once. Just once. So she's getting a whole lot less anesthesia than in the past. She's still getting her acetaphetamine (Tylenol) as scheduled, but that's not the kind of thing to cause constipation.

She started out pretty happy things were moving again, and relieved that her pain level had dropped so much, but her spirits were absolutely crushed when doctors said she'd have to keep the NG tube for a day or two, and that it would be a minimum of two to three days until things get going again and she can head home. She hates the NG tube; it causes headaches and earaches, and makes it painful to talk or even swallow. And she says it's not the kind of pain the pain meds in the PCA pump help with. She's hungry, but can't eat anything. And she's thirsty, but can only suck on ice chips. She's tired of going through this and is worried she might not ever get out of here. This is the second time this stay they had to put the NG tube in, suction everything out, and start over. This isn't even the first stay where they had to do this. Back in 2013, on her first stay, this same thing happened. So she's worried it could just happen again and again. The doctors had indirectly addressed this, saying this time around she's going to be on multiple stool softeners every step of the way, but she's still extremely upset over going backwards again, and has been feeling really down most of the day.

Sigh, 2 To 3 Days?

Karen's stomach was so distended this morning that the doctors said it looked as big now as it did a week ago. It's actually holding the wound slightly open, and preventing it from healing shut. The wound is still draining a lot too, and looks worse than before, at least to me. The doctors all want to check it, but still no one seems to be too worried about it. The constipation is what's on everyone's mind.

It's been over 72 hours now since she's passed any stool. They've tried just about everything to get Karen going again. Besides doubling down on everything from yesterday, they've given her milk of magnesia, seena, several different types of enemas, and even tried a manual removal. And she has been doing a lot of walking, not as much as yesterday, but still a lot. Her pain level keeps going up and up, and was putting it at an 8 out of 10 today. The palliative team told her they'd be willing to raise the dosage of her pain medication, but told her doing so might slow her intestines down even more. So she declined. They were going to discontinue the PCA pump last night or this morning, but decided to leave it there to help deal with the pain. They want her off the pump for at least a day before sending her home.

She hasn't eaten anything in the past 48 hours out of her own volition. Well, except for a little warm broth last night, thinking maybe it would help. Despite not eating, she started to get very nauseous today. When attempting to drink 20oz of magnesium citrate in under an hour - which is typically how one would prepare for a colonoscopy - she started vomiting. And retching is what caused the tearing of her stomach muscles the last time. At this point they wanted to put an NG tube in. Karen had told me she was going to refuse another NG tube, but I guess when you're feeling as miserable as her you're willing to try anything for relief. So she agreed to having another NG tube. Luckily this one went in fairly easily, and they are currently sucking out the contents of her stomach, which should help alleviate the nausea. If they don't find too much in there they will try sending another bowl prep in through the NG tube. With her rising pain levels, she didn't get as much sleep last night as she had gotten the past couple before, but she might not be getting much at all tonight if they try another bowl prep. If there's too much in there and they feel they need to decompress her stomach all night and into tomorrow, she'll get to sleep, but it could add a day or two to our stay.

1 To 2 Days

Karen is sleeping a little better at night without those pesky bathroom breaks. Unfortunately, this means she's still had no bowel movements, and it's been over 48 hours now. Her abdomen is really getting distended. They have her drinking as much prune juice as she wants, and they have Colace, MiraLAX, and suppositories at her disposal. She didn't have an appetite to eat breakfast or lunch, and just wanted a little broth for dinner. She seems quite worried they're going to have to put the NG tube back in, but I think even the doctors are hesitant to do that now. Everyone seems to think, since things were running well before, that this is just constipation caused by all the pain medication she's taking. This was never a problem with the ostomy, so this is new to us.

The palliative team have taken Karen off the continuous drip and have moved her to a patch. They said we could do either patches or pills, but we went with the patch. It only needs to be changed once every 3 days, so it's much easier to to keep up on and you don't have to worry about missing a dose or timing it wrong and waking up in pain. We still have the PCA pump, but it only administers the painkiller when you press the button now. So far this seems to be working well. They are watching the counts, and if she doesn't hit the button too often they will know they have the right dosage for the patch and she will be good to go home tomorrow. She'll also have a little "breakthrough" medication at her disposal to take the place of the PCA pump. If she needs to use the PCA pump often they might want to keep her an extra day to attempt to adjust the dosage. That said, her pain level is up due to all the distension in her stomach, so I'm not sure how it's going to affect these plans.

It seems the wound may finally be starting to seep less. For a while there it seemed to be draining more and more. Either way the antibiotics seem to be keeping things in check. And it hasn't gotten all red or inflamed yet, which is what everyone seems to be watching for now. The surgeon says Karen's ready to go home, but doesn't want to release her until she's pooping. So we're almost there; just one or two more days.

2 To 3 Days

Karen actually managed to get a decent night's sleep last night. We're getting fewer random visits from doctors, and things seem to be calming down a little as far as the bathroom goes. We were pretty happy things were slowing down, but she actually hasn't had a bowel movement since yesterday before bed. There doesn't seem to be any less swelling in her abdomen today; if anything, this has caused more pressure. No one seems too concerned at this point, but it's been over 24 hours.

The palliative team beat the surgical team in this morning. But neither came until after 8am. We didn't even get the super early doctors around 4 or 5am. We are thinking Karen must be less "interesting" now, and figure it was a good sign. They lowered the continuous dosage on her painkiller some more, but still haven't transitioned her away from the PCA pump. Her pain medication is the last thing she gets via IV, everything else has been transitioned over to pill form.

Next, the surgeon came in with a helper. He pressed and squeezed the drainage out of the surgical site. There was so much drainage. He said that the JP drain must had gotten blocked, perhaps by a clot, and came out too early. The whole process looked quite painful, but Karen seemed fine and wasn't wincing or anything. She says she doesn't feel much on the surface near the surgical incision, but later in the day the whole area was certainly more painful. The doctor said it was now purulent, which I've read is just a fancy way to say it's now draining pus, but it does mean there's some kind of infection going on. She's still taking the antibiotics for the UTI, so maybe they are hoping that will help with the infection.

When she woke this morning her pain level was at a 2 or 3 out of 10; the best it's been her whole stay. But between the increased pressure, lower pain meds, and the manipulation of the wound, her pain level had gone up quite a bit by mid day. It was back around a 7. To be fair we've also done more walking today than ever before as well, so that's also bound to raise her pain level a bit. Laying in bed now before going to sleep it seems to have dropped a little, perhaps to a 4 or 5, but this is mostly because she isn't moving around.

Everyone seems to think we'll be out of here in 2 or 3 days. This is the same time frame they gave us directly following the surgery. In fact, for the first half of our stay everyone kept estimating 2 or 3 days. This happened for about a week, and then they stopped giving us estimates. At one point we were told, "Don't worry we won't send you home until you're better." We weren't asking, but they must be so use to people asking that they felt obligated to provide such information. We can't help but find a little humor in the new estimates of "2 to 3 days."

Another Day

Directly after my last post, Karen had chills and a very low grade fever. But it was time for her acetaminophen, which broke the fever. I don't know what that was about - if it was related the UTI or something else - but she's been fine since. Of course she had to get up multiple times throughout the night to go to the bathroom, but that was expected. Lunch was her first regular fiber meal, but it made her a bit nauseous. There was also some pain, which the doctors say may have been gas pain. And then dinner went down fine without a hitch.

The surgical incision still has drainage. The surgeon looked at and I overheard him saying the drainage was seropurulent. He told us there wasn't anything to worry about yet. Later in the evening someone else from the surgical team looked at it and said it may have to be drained in the morning. She's also had her continuous painkiller dosage reduced, and they are moving her onto pills for most medications.

Solids

Karen is back on solid foods. She started slow as planned, and is still eating a low fiber diet. With her pain level slowly climbing the palliative team came to the rescue again. They increased the dosage of her contiguous hydromorphone by 20%. This brought the pain level down enough that she's actually been hittin the PCA pump less. It actually seems significantly less; so much so that I wonder if her pain level hadn't started to turn around on it's own as well. Her swelling seems to be going down, but ever so slowly. Her surgical site is still weeping, but it's mostly clear fluid and the area doesn't look pink or red. However, the longer this goes on - and it has been going on longer than anyone would like - the better the chance she has of getting an infection in the area. In that case it may have to be lanced and stuffed with gauze, which is as painful as it sounds.

A couple days ago Karen started getting pretty confused at night. Everyone we told would say, "Well, she's/you're on some pretty strong drugs." And then shrug it off. But she's been on these exact drugs before without these side effects, so I wondered if it couldn't be something else causing the confusion and asked for a UTI test. When I mentioned it to a nurse or doctor, they ensured us her urine was "clear" coming from the catheter, and that they'd be able to see if there was a problem. They also said her white blood cell count was normal, and it would be elevated if there was an infection. My response was that if Karen's white blood cell count was in the "normal" range, that was elevated for her. Her temperature is also pretty normal, but she's on IV acetaminophen (Tylenol) and that would mask any fevers. And her pain meds would probably mask any pain. Karen had also been complaining about feeling the need to pee, which can happen with a catheter, but I didn't like that either. So I told the doctors, just with everything going on, I still felt like it could be a UTI and would feel better if they did a test. It takes two days to get the results, so sometime last night they got the results back and started her on some antibiotics first thing this morning. The test had come back positive.

I'm disappointed they didn't start her on an antibiotic a few days ago when we requested the test. But the bright side is, the test suggested the use of levofloxacin, which is also commonly used to treat skin infections. So this should help lower her odds of getting an infection at the surgical site.

All Tubes Out

Karen requested the NG tube be taken out around noon. She said it was even painful coming out, which is strange because she usually only describes it as feeling weird when being removed; they've never hurt coming out before. One of the nurses had suggested there might be some scar tissue from having had one for so long before. She's still on a liquid diet, but should be starting on solid food sometime tomorrow.

They've had her on Lasix, a dietetic, since surgery. But it didn't make much of a difference until the catheter came out, which also happened yesterday, but got lost in all the excitement. So not only is she going to the bathroom frequently as she adjusts to using her lower intestines again, but she's peeing frequently for 5 or 6 hours after her Lasix. She refuses the 9pm dose, but all and all she was still up a lot last night, and we're expecting the same tonight.

Yesterday and the day before, the doctors had been saying her bloating was going down, but she told me she didn't feel a difference herself. Today is the first day where she can actually feel the bloated going away, and seemed a little excited about it. Her pain level is slowly creeping back up, and this concerns me a little since the same thing happened before they had to go back into surgery to replace her mesh. It seems too soon, but I suppose she also might be developing a tolerance to the hydromorphone the PCA pump administers.

Poop

Karen's intestines are up and going at full speed. Which of course means she didn't get much sleep last night; she must have gotten up 6 or 7 times to go to the bathroom. (And suggested the title for this post.) So she's a bit more drowsy than she was yesterday. Yesterday they were able to get her pain level down to a 5 out 10, and was hovering around a 6 the day before. Today, it's occasionally come down to a 4. She says she can deal with a 3 out of 10 well enough to read for pleasure, or hold a casual conversation, but her goal is a 2 out of 10.

The surgical team decided she could have her NG tube taken out, but she had such a traumatic time with it going in that she asked if they could do a test run before removing it. So they started with a "clamp test." They turn off the suction for 4 hours and then see how much they can suction up through the tube. Nothing came back up the tube, so she passed the clamp test. This was around noon, and soon she was allowed to have clear fluids. She started slowly with water, and had some broth with a cup of coffee for lunch. She's getting a clear liquid dinner now. After she's been on clear fluids long enough without getting sick, they will advance her to solid foods and at that point they will have to remove the NG tube.