Karen never quite recovered after this last surgery. She wanted to go see family and we kept planning visits but she was very lethargic and when it came down to it she just never had the energy. To make matters worse, Wednesday evening - the 15th - she got what looked like a bad spider bite on her back. The next day there were a lot more, following from her back towards her stomach along her abdomen. The looked more like flea bites now, with the first one she had gotten still looking worse than the others. Some friends visited from out of town and when she showed them, one of them was quite certain they were bed bug bites.
We compared pictures of flea bites to bed bug bites and couldn't tell the difference. I had been urging her to see a doctor since the bites had popped up and they had become so insanely itchy over the weekend that she agreed to call first thing Monday morning. Dermatology at Mayo was able to see us the same day. The doctor took one look at the bumps which had just started to blister and declared them to be shingles. Apparently it's very common for them to appear on just one side of the body and go from back to front about abdomen level. This is because the virus affects only the skin that the affected nerve supplies. Since we had been comparing pictures, it's worth mentioning the images that come up in google image search aren't nearly as bad as the outbreak Karen had.
The doctor told us that they don't typically start worrying about shingles until people get into their 60s. She said shingles are often triggered by a surgery, low immune system, stress, or an upper respiratory infection. Karen had all of these. The surgery and it's results had been a source of stress, and she got an upper respiratory infection afterwards - we assume from the tube they had put down her throat scratching it. Oh, and she's had a low immune system since the chemo. The doctor warned us that even after you get shingles, there's roughly a 10% chance of getting it again, and suggested Karen get a shingles vaccine once she's recovered from everything.
The drugs they give you to deal with the itching and nerve pain were all drugs Karen was already on due to her neuropathy. Perhaps if this weren't the case we'd have been in sooner. We were given a prescription for an antiviral, famciclovir, but were told it really works best those first 24 to 48 hours, and may not help much now. Antivirals help reduce the severity and duration of outbreaks, but famciclovir is also used in cases where someone has a weakened immune system. This is to keep the virus from spreading to other locations - it's not uncommon for shingles to spread to other nerves nearby. All things considered, this is not a bad outcome.
Thursday, October 23, 2014
Tuesday, October 7, 2014
Cancer
It turns out what we had hoped was only scar tissue, wasn't even scar tissue at all. It was all cancer. This means the chemo was ineffective against the cancer. Which also means there's pretty much guaranteed to be more cancer other places inside of Karen; we just haven't noticed it yet. Which also means cancer is not likely something she will overcome. The doctor said to think of it as a chronic disease you live with, like high blood pressure or diabetes.
It appears to be a slow growing cancer, so that should give us more time than a faster growing cancer would, but no one can yet say how long. The doctor explained that the first one to three years will be the biggest indicator on how fast things will progress. If things are going to go bad quickly, then it should become apparent during this time. If we make it past those first three years or so without the cancer popping up anywhere important, then another five wouldn't be unreasonable.
During the surgery all the cancer from the site on the left was removed, but some from the site on the right was intentionally left behind due to the proximity of the tumor to the stoma. The doctors performing the surgery decided that it was more important to protect the integrity of the stoma than it was to remove the rest of the tumor. It's horrible to think that cancer was intentionally left in you because taking it out would cause more pain and suffering than removing it would. That's how sure they are that there's more cancer. The doctor said when it does become painful or cause problems with the stoma, he will do another surgery to remove that tumor and any others that have shown up on scans by then.
It was suggested that Karen start maintenance chemo in four to six weeks, once she's fully recovered from the surgery. But we'll know more after we've seen the oncologist. There's not much of a rush to see him because they want Karen to recover from the surgery first before starting with anything else anyway. The goal of maintenance chemo would be to have enough chemo in you to slow the growth of the cancer, but not enough to give you side effects that affect your quality of life.
Karen's not one to give up, and seems to be willing to give full strength chemo another go, even with as much as she hated it the first time. But the doctor we spoke to today didn't seem convinced it would be any more effective a second time, even if we changed things up. This will be something we talk to the oncologist about on our next visit. For now we're just going to stay as positive as we can.
It appears to be a slow growing cancer, so that should give us more time than a faster growing cancer would, but no one can yet say how long. The doctor explained that the first one to three years will be the biggest indicator on how fast things will progress. If things are going to go bad quickly, then it should become apparent during this time. If we make it past those first three years or so without the cancer popping up anywhere important, then another five wouldn't be unreasonable.
During the surgery all the cancer from the site on the left was removed, but some from the site on the right was intentionally left behind due to the proximity of the tumor to the stoma. The doctors performing the surgery decided that it was more important to protect the integrity of the stoma than it was to remove the rest of the tumor. It's horrible to think that cancer was intentionally left in you because taking it out would cause more pain and suffering than removing it would. That's how sure they are that there's more cancer. The doctor said when it does become painful or cause problems with the stoma, he will do another surgery to remove that tumor and any others that have shown up on scans by then.
It was suggested that Karen start maintenance chemo in four to six weeks, once she's fully recovered from the surgery. But we'll know more after we've seen the oncologist. There's not much of a rush to see him because they want Karen to recover from the surgery first before starting with anything else anyway. The goal of maintenance chemo would be to have enough chemo in you to slow the growth of the cancer, but not enough to give you side effects that affect your quality of life.
Karen's not one to give up, and seems to be willing to give full strength chemo another go, even with as much as she hated it the first time. But the doctor we spoke to today didn't seem convinced it would be any more effective a second time, even if we changed things up. This will be something we talk to the oncologist about on our next visit. For now we're just going to stay as positive as we can.
Thursday, October 2, 2014
Surgery Complete
Karen's surgery got pushed back till 1, which is exactly what we were expecting. The surgery lasted until about 3:30, which was much unexpected. The doctor says he ended up removing more tissue than he expected, it all sounds very ominous. He's sent it off to pathology for an official report, and we'll see him on Tuesday to go over the results. We're still planning on going home today, and will be on our way soon.
Wednesday, October 1, 2014
One Year Follow Up
It's been a year now since Karen had her big surgery, so it was time for another follow up visit with the doctor that performed the operation. It was actually a very short visit. He thought everything was going well and was happy to see Karen had put some weight on since he last saw her.
During the exam, he felt the scar tissue that was left behind from the laparoscopic surgery Karen had before we knew it was cancer - pre Mayo. The surgery that started it all was a cyst removal surgery at Banner Good Samaritan. The doctor doing the surgery didn't realize it was actually cancer and cut up the tumor and pulled it out through the small incisions made for the laparoscopic surgery. After the pathology report showed cancer, one concern was if any cancerous implants had been left at the location of the incisions where the tumor was pulled through the body piecemeal.
The big surgery Karen had at Mayo healed rather cleanly. You can still see a scar, but it's mostly superficial. And while the scars from the laparoscopic surgery are hard to see, the surgery had left large nodules of scar tissue under the skin. Karen had remarked that she'd rather have the scar on the outside then all that scar tissue inside. The lumps had begun to bother her more lately, to the point where it was hurting, and was now something we planned on asking the doctor about. He brought it up on his own.
He believes this scar tissue may be something more. It seems to have grown a small amount since our last visit with him, and he says when you're in a situation like Karen's, it's better to error on the side of caution. To make sure it's only scar tissue he wants to do a quick outpatient surgery. Make a couple incision, remove the nodules, and send them off to pathology. One side effect of this surgery will likely be the lessening of the pain she's been feeling in those areas.
Although it's not particularly urgent, he sees no reason to delay, and has scheduled the surgery for tomorrow at noon. Karen can even eat breakfast in the morning, provided it's something soft like eggs and not something harder to digest like oatmeal. This is all a bit fast, but the possibility of cancer is already weighing on Karen and this gives her less time to worry about it. I think we're both happy to have such a quick turn around.
I'll post again tomorrow after the surgery, but since it's midday and other surgeries may run over, Karen's surgery might get pushed back later into the day, but it should be a quick surgery nonetheless.
During the exam, he felt the scar tissue that was left behind from the laparoscopic surgery Karen had before we knew it was cancer - pre Mayo. The surgery that started it all was a cyst removal surgery at Banner Good Samaritan. The doctor doing the surgery didn't realize it was actually cancer and cut up the tumor and pulled it out through the small incisions made for the laparoscopic surgery. After the pathology report showed cancer, one concern was if any cancerous implants had been left at the location of the incisions where the tumor was pulled through the body piecemeal.
The big surgery Karen had at Mayo healed rather cleanly. You can still see a scar, but it's mostly superficial. And while the scars from the laparoscopic surgery are hard to see, the surgery had left large nodules of scar tissue under the skin. Karen had remarked that she'd rather have the scar on the outside then all that scar tissue inside. The lumps had begun to bother her more lately, to the point where it was hurting, and was now something we planned on asking the doctor about. He brought it up on his own.
He believes this scar tissue may be something more. It seems to have grown a small amount since our last visit with him, and he says when you're in a situation like Karen's, it's better to error on the side of caution. To make sure it's only scar tissue he wants to do a quick outpatient surgery. Make a couple incision, remove the nodules, and send them off to pathology. One side effect of this surgery will likely be the lessening of the pain she's been feeling in those areas.
Although it's not particularly urgent, he sees no reason to delay, and has scheduled the surgery for tomorrow at noon. Karen can even eat breakfast in the morning, provided it's something soft like eggs and not something harder to digest like oatmeal. This is all a bit fast, but the possibility of cancer is already weighing on Karen and this gives her less time to worry about it. I think we're both happy to have such a quick turn around.
I'll post again tomorrow after the surgery, but since it's midday and other surgeries may run over, Karen's surgery might get pushed back later into the day, but it should be a quick surgery nonetheless.
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