Quick Surgery Follow Up

The surgery lasted roughly 3 hours and turned out well. The doctor said the mass was larger than he had hoped, but everything went as expected and was happy with the results. They removed the mass from her stomach and a good amount of muscle it was attached to, put a mesh inside her to cover the hole left by the tumor and the muscle it was intertwined with, and reversed her ileostomy. They plan on keeping her for 2 to 3 days, but it may be upwards of 5. Things may return to normal quickly over a week or two, or it may take several months. Karen's says either way she's happy about it. Her ileostomy limited so much of what she could eat, and prevented her body from absorbing some of the nutrients from what she could eat. She's hoping that in addition to being pain free, she will now have better energy levels and less fatigue.

Another Surgery

Last month, on the 10th, we met with the surgeon. He didn't have any real surprises for us. He wasn't happy Karen had to use so much pain medication due to the cancer in her abdomen, in and around her stoma, and said he could take out that growth. It's still right near the surface, and the other spots seem to be fairly stable, so he wouldn't go digging for them. This would be a fairly minor surgery compared to what she had been through in the past, but for any surgery she'd have to be off chemo for at least 4 weeks.

He told us the longer we wait to have it removed, the more it would grow, and the more surrounding tissue would have to be removed with it. Suggesting that if it does become unmanageable with pain meds in the future, it's possible to have grown so much that surgery might not be an option. As it is now, some stomach muscle might have to be removed with the tumor, and the intestines forming the stoma itself will have to be resected (recut). But he never said we "needed" the surgery, or even that we "should" have the surgery. He was very careful to just present it as an option, and to leave the decision entirely up to us. It's nice to have full control over important decisions when your life often feels so out of control.

I asked about what the oncologist mentioned, HIPEC, and he said it could be done again after a debulking surgery where they try to remove spots from all around, but this wouldn't be anything so drastic. I also asked if removing stomach muscle would make someone more likely to get a hernia. The answer is yes, but if much of the muscle had to be removed, he'd just put in a mesh right then and there to prevent any possible future hernias.

We were both leaning towards a having the surgery, so we opted to take a break from chemo for 4 weeks and meet with the surgeon again in a month. And that day was yesterday. We have decided to go ahead with the operation and had already contacted scheduling, telling them it was ok to schedule us for surgery after our appointment with the doctor. He agrees with our decision, and thinks it's best to do it now. The expected stay is five days, but depending on what they end up doing with her intestines, it could take up to a month or two to feel herself again.

They have us scheduled for tomorrow, but we don't know when yet. We have to call after business hours today to get a check-in time. This part reminds me of jury duty, where you have to call the night before to see if you've been excused. I guess if someone with an urgent need walked in today, they could be scheduled for tomorrow and push our surgery off to another day. Or maybe cancellations could move us earlier into the day.

So far when we've mentioned another operation to people, they seem to feel sorry for Karen. "Aww, I'm so sorry." But this growth is something we've noticed for a while now, even before we went on our long trip. In fact, Karen first noticed pain in that area over a year ago when she started chemo again. I remember her mentioning it and saying, "I hope it's just the cancer crying out in pain as it's dying." But we both suspected otherwise. This surgery will be a conclusion to that long and building concern, and we're both glad it's happening.

Growth

Karen had a CT scan yesterday evening, and today we saw the oncologist. He confirmed what we had already suspected, the cancer around Karen's abdomen has grown since the last scan, since we took off for our trip. The area has become increasingly tender for her, and she has to be careful when bending over to pick something up or stretching to reach something, as bending and stretching hurts the area. The oncologist said there weren't any notable changes anywhere else, but we've also noticed her energy levels and fatigue seem to be getting worse, and she sometimes has random bouts of nausea. We had expected this to change while off chemotherapy, but it seems to be about the same.

The doctor suggested maybe having another surgery to remove the mass that is growing in her abdomen, and if she's going in for surgery, maybe another HIPEC. The surgeon who performed it last time seemed to think HIPEC was a one shot thing, and wouldn't be something we could do again, but perhaps something about the situation has changed, or perhaps new technology or studies have changed this. The oncologist said he would contact our surgeon and get his opinion. In the past we've found the surgeon to be very straightforward and honest. He manages to be both polite and blunt at the same time. So we've decided to make an appointment with him either way, just to hear his opinion on things.

As you can imagine Karen isn't excited about the idea of another surgery. The surgeon had said he only foresaw one more operation in her future, and worries the scar tissue from that surgery will make another surgery impractical. He says scar tissue is "sticky" and will adhere to her organs and intestines. Karen worries if it's put off too long, she might not be healthy enough for it. She's also worried, if it's put off, that the cancer will stick to more of her intestines and take more of them with it when it's finally removed. It's a lot to think about, and unfortunately, thinking about it doesn't do much good. Hopefully she can keep her mind on other things.

Marriage

Marriage is what brings us together today. Karen and I are getting married this Friday. We had been waiting for a good time to get married, but grew wary of waiting. So we decided to just go get married at the courthouse. Then, when Karen were feeling up to it, we could have a proper wedding and reception.

We told our immediate families about the decision and they all wanted to be there. The courthouse doesn't allow us to have that many guests, and we could have just refused them, but there is a chance Karen will never quite feel up to doing more. So we are going to have a small outdoor wedding at a local prayer garden and we'll go to a restaurant for food after. Hopefully there will be a chance to have a bigger reception at a later date, but if not, then at least we had this with our family.

Discharged

A lot of different doctors make rounds through the hospital. We get visited by the the oncology team, the palliative care team, and general surgery. To keep things from being total mayhem, each patient has one doctor who has final say in which medical treatments they recommend. For Karen, this has always been the doctor who performed her first surgery at Mayo. However, this time he was out of the country, so she had someone different this time. The end result of all of this is our doctor was paged and ran off to surgery before she could discharge Karen. While everyone else seemed to agree she was good to go, she wasn't discharged until 3pm.

It might sound bad, but I think the extra time made us feel a bit more comfortable about going home since Karen had more experience with solid food. She got to eat both breakfast and lunch at the hospital, and they both went smoothly. There's still bloating afterwards, which honestly makes me a little nervous. But we've never dealt with a mechanical blockage before, and the doctors don't seem overly concerned about it, so maybe it's par for the course. There's also still some pain near her diaphragm on the left side. No one is really sure if it's related to the blockage, the chemo, or even the cancer itself. When we left her vision was still a bit blurry, but better than the day before. And now at the end of the day, it has cleared up entirely. We're not sure which medication caused it, but we have our suspicions. Shortly before her vision went blurry she was given chlorpromazine (Thorazine) for nausea, and that's one of the new medications we were trying out.

The doctors had said she would have to "change her diet." And that just sounds ominous. Karen in particular got the impression there would have to be permanent changes, but it was never brought up again. They did put her on a low fiber diet, but that's not really the type of diet you stay on long term. We asked the nurse if the discharge instructions said anything about how long Karen was suppose to stay on a low fiber diet, and she said no, but that when she sees it after something like this, it's typically two weeks. A little research on Mayo Clinic's website suggests you slowly start added fiber back into your diet as your digestive system returns to normal. We'll have to call to find out more, but this last bit sounds the most reasonable.

When you look into the diet itself, the low fiber diet sounds quite unhealthy. The more cooked or processed the food is, the lower the fiber. So raw carrots, that's a no no. Canned carrots? That's ok. Whole wheat bread? Nope. Donuts? You bet. Beans? No. Potato chips? Yes. Actually, it almost sounds like a diet you could enjoy. Almost.

Solid Food

Karen started the day with another liquid meal. When the doctors came to check on her they were pleased with how things were going and decided to advance her to a low fiber diet. They said if she were itching to get out of here she could go home as soon as today, but said they would feel better if she stayed an extra day and left Thursday instead. Karen agreed and said she'd be more comfortable taking things slow. She certainly doesn't want to trigger the blockage again and go through everything all over again.

Her liquid breakfast didn't make her feel bloated, so we were quite happy. Lunch time rolled around and they brought her another liquid only meal. The doctors had said she could have solid foods, but Karen was happy taking things slow. Then after she finished eating, they came in with a low fiber lunch. I guess the order didn't make it in time for them to cancel the first lunch, but with enough time for them to start on a second order. Oh well. She had some cooked carrots between meals and a low fiber dinner. She's handling all the food quite well, but did feel bloated after lunch and dinner. We're still hoping it's just a combination of the chemo and her stomach getting use to food again, and it doesn't sound like it will stop the doctors from releasing her tomorrow.

Since we've got such a wide range of doctors visiting her here at the hospital, they've been trying out different medications on her nausea, which has been a problem with chemo. We think one of them has given her blurry vision. Hopefully this clears up by tomorrow, but I don't think it's the kind of thing they'll hold her for. Her throat is still sore and her voice is still scratchy, but overall she's feeling a lot better. Her color looks much better too; I assume that is due to her coming off some of the stronger pain medications she's been on.

All signs point to tomorrow. They've said she can go home in the morning, but with all the paperwork they have to do for discharge, we don't really expect to leave until noon.

Progress

This morning they scheduled an x-ray to look at Karen's intestines. It looked good enough for the doctors to suggest clamping her NG tube. They clamp the tube for 3 hours and then reconnect it and turn the suction back on to see how much gastric acid - stomach acid - has built up. If things are moving through very little comes out. However, if there is more, then that means things aren't moving through well. When stomach acid isn't moving through, it can quickly build up to the point where it makes you nauseous, so they will stop early if she gets nauseous.

Two and half hours into the clamping test she became very nauseous. They gave her something for the nausea and reconnected the NG tube to the suction. Almost no stomach acid came out, which means at least that much was going through. The nausea in this case was simply from the chemo. She normally gets bouts of nausea from the chemo, so that's all it was.

Less than an hour later the doctor's order came through allowing her water and ice chips. This was a little after 3pm. After a couple hours more, they ordered her a liquid dinner. It was vegetable broth, a liquid protein supplement, something jello like, and tea. She felt pretty bloated afterwards and they gave her an antacid. We were a little worried at this point because blockages often start with a bloated feeling, but everything seemed to go through. Karen thinks it was just her stomach adjusting to being used again.

She's still sore from all the cramping and bloating earlier, but it's improving. Her throat still hurts from the NG tube and her voice sounds very scratch. But all in all, she's in very good spirits. They told us that it's looking like she'll be out of here by Thursday.