It's been one year since Marye was in University Hospital with a severe gall bladder infection. She was admitted for 17 days and between the infection and pneumonia that she contracted in the hospital, it was a pretty rough stretch. Since then, she's struggled through several different chemo drugs with varying levels of side-effects and efficacy. Overall, though, she is in a substantially similar condition to what she was last spring. So, maybe to celebrate the first anniversary of her going into the hospital, we found ourselves in the Norton ER late one Saturday night, almost exactly one year to the day as she did last year.
One the very night that I made my last post, she was having a fair amount of pain in her side, which she recognized as the gall bladder pain from last year. When her temp went over 102, I knew it was time to go downtown. So, there we were, at 01:30 am, in the emergency room, getting the usual CT scan and blood work. To make a long story short, she was admitted on Sunday morning, and went on a regimen of antibiotics and fluids to treat a mild infection. The fever broke pretty quickly and her blood work started looking better almost immediately. By Monday evening, she was feeling a little better, although the pain in the gall bladder takes longer to clear up. But she was ready to come home, and the whole thing was over in less than 48 hours. Not too bad.
Again, those gall bladders are really touchy, and she did have some pain for a few more days, but it was not nearly as bad as last year when she had a major infection. The CT scan showed the gall bladder collapsed (good), and the main tumor in her liver measured at 4.6 cm, down from 6 cm in November. This is a different CT scan machine than the one that she usually gets done, so it's kind of like comparing apples to oranges regarding the other cancer findings. But you can't deny a shrinkage from 6 to 4.6 cm.
That Thursday, Marye's blood numbers looked much better, but not quite good enough for chemotherapy, so she got another week off. This past Thursday, everything looked absolutely normal (blood-wise) and she took her treatment. She is scheduled for a CT/bone scan and MRI this week, so we're anxiously awaiting the results of that. Otherwise, she is back on treatment and is holding her own. She still has some bad days when she feels pretty lousy. Nothing much to say about that, that hasn't been said many times already. It does take an emotional toll, though.
Anyway, I'll post again later this week when we get the scan results back. Until then...
-C
Sunday, February 10, 2013
Saturday, January 26, 2013
Fleshing things out
Last week I posted about the new drug, Navelbine, that Marye has been taking since the new year. As I mentioned, it is treating her much better than the Gemcitabine or Xeloda that she was taking the last few months of last year. While it's true that she hasn't suffered the debilitating nausea that she had before, it's still not a panacea. After all, it's chemotherapy. This week, Marye's blood counts were too low for her to take treatment. Her white blood cells were 1.6, and the neutrophils were 0.8. Far too low. Moreover, her red blood cells and hemoglobin were also depleted. This accounts for her really excessive fatigue lately. That has been an issue for months, but it's gotten more pronounced since she's been on the navelbine. Another concern is the aching back that she's been experiencing recently. As you recall, she does have metastasis to her spine. This is not a life-threatening condition, but it can be painful. I'm worried that her backaches might be related. But this brings us to a reality of chemo. Because it's very mild (nausea inducing-wise), the navelbine can be given weekly. This is very good to fight cancer, but it takes a toll on the rest of the body. Since her body doesn't have a chance to bounce back, each treatment just beats her blood counts down a little more. By skipping treatment this week (out of necessity), her body should get a break and recover on its own. As we do like the idea of frequent chemo (to fight the cancer), we're hoping she can get back on schedule and take treatment next week.
This also brings me to some other issues that I've been contemplating lately. Nearly every day, someone asks me how Marye is doing. This comes from across the spectrum of people who barely know me and only that my wife has cancer, to those close friends and family members who are intimately familiar with every aspect of her disease and treatment. This is a good thing. Most people are genuinely concerned with how she is doing and care very much about her. Those who only know me are interested in her well-being and how it is affecting me. Many people have very little experience with a serious illness and the realities of caring for someone in her condition. Again, this is ok. Even I am constantly learning something. Just when I think I've got a handle on how to deal with this, something new comes up and forces me to readjust. As Donald Rumsfeld said, you have to recognize that we don't know what we don't know.
My point is this: when someone asks me how Marye is doing, my brain instantly starts evaluating how I'm going to answer. It's not that I am reluctant or trying to withhold information. But I have to figure out a coherent answer taking into account several factors, including what this person knows already, and, very importantly, how much they really want to know. Sometimes, people are not really prepared for the realities of cancer. I try to take that into account when figuring out how much I want to gloss over the details while still imparting an accurate picture of how she is doing. If you are reading this blog, you are most likely aware of how difficult it is to watch someone whom you care about go through a protracted illness, either through reading this, or your own life experiences. But for many people, this is something that they haven't even considered in the course of their lives. Cancer is something that Marye lives with every minute of every day. And although I am not in her shoes, I live with it, too. I can put it aside for brief periods when I'm doing something else. But it's a major part of my life, every single day. So, I try to respond to questions about her by putting it into a context that I believe and hope will make sense.
Finally, I'd like to talk about what is actually the very first thing that comes into my head when someones asks "how's Marye doing?" Before I even try to phrase the answer into a very personalized response depending on who is asking, I need to figure out, simply, how she is doing. Again, if you're reading this, you probably have a good sense of the complexity of treatment. There is a balance to be struck between the side-effects and efficacy of chemotherapy. So, it's really a multi-part question. 1) How is she feeling (based on side-effects of treatment, complications of cancer, emotionally, etc.), and 2) how is the cancer doing (the efficacy of the treatment)? These factors often have no relation to each other. For instance, she might be enjoying a period of very few (or manageable) side-effects, as with the Taxol. But if the chemo is ineffective, it's not accurate to say that she's doing well. Likewise, if the the chemo is really kicking her butt, but it's shrinking the tumors, it's hard to say things are looking good. Also, she can feel really lousy for days on end, then have a brief reprieve from the nausea. If you ask me how she's doing, I could answer that she's feeling lousy, but right now, she's feeling pretty good. There is also an emotional aspect to this, and that adds another layer of complexity to the seemingly simple question, "how is Marye doing?"
I hope that makes sense. As the name of this blog is "Marye Update", I try to give an accurate sense of how she is doing. Hopefully, you can understand the factors that go into trying to answer that question. Having said all that, please don't stop asking about her. It is both uplifting and humbling to know that there are so many people who care enough to read this blog and ask about her. But, when you do ask, just understand that it's not always an easy question to answer, and you might get more than you expected.
So, with all that in mind, here's how she is doing: she has been feeling pretty weak, most likely due to the weekly chemotherapy treatments. Hopefully, the break this week will give her a chance to recover a bit. Also, she has been somewhat achy, and I'm concerned that that may be from the tumors on her spine. As for efficacy, she is scheduled for a CT and bone scan in February, so we won't know anything about that until then. The fact that she's taken 4 treatments in a row gives us hope that the cancer is shrinking. And although she is not suffering the severe side-effects of the gemcitabine, she never really feels great. That said, she does have good days and is often able to get some chores done and do her knitting. I'll post again next week to update on her blood counts and chemo. Thanks for reading.
-Chris
This also brings me to some other issues that I've been contemplating lately. Nearly every day, someone asks me how Marye is doing. This comes from across the spectrum of people who barely know me and only that my wife has cancer, to those close friends and family members who are intimately familiar with every aspect of her disease and treatment. This is a good thing. Most people are genuinely concerned with how she is doing and care very much about her. Those who only know me are interested in her well-being and how it is affecting me. Many people have very little experience with a serious illness and the realities of caring for someone in her condition. Again, this is ok. Even I am constantly learning something. Just when I think I've got a handle on how to deal with this, something new comes up and forces me to readjust. As Donald Rumsfeld said, you have to recognize that we don't know what we don't know.
My point is this: when someone asks me how Marye is doing, my brain instantly starts evaluating how I'm going to answer. It's not that I am reluctant or trying to withhold information. But I have to figure out a coherent answer taking into account several factors, including what this person knows already, and, very importantly, how much they really want to know. Sometimes, people are not really prepared for the realities of cancer. I try to take that into account when figuring out how much I want to gloss over the details while still imparting an accurate picture of how she is doing. If you are reading this blog, you are most likely aware of how difficult it is to watch someone whom you care about go through a protracted illness, either through reading this, or your own life experiences. But for many people, this is something that they haven't even considered in the course of their lives. Cancer is something that Marye lives with every minute of every day. And although I am not in her shoes, I live with it, too. I can put it aside for brief periods when I'm doing something else. But it's a major part of my life, every single day. So, I try to respond to questions about her by putting it into a context that I believe and hope will make sense.
Finally, I'd like to talk about what is actually the very first thing that comes into my head when someones asks "how's Marye doing?" Before I even try to phrase the answer into a very personalized response depending on who is asking, I need to figure out, simply, how she is doing. Again, if you're reading this, you probably have a good sense of the complexity of treatment. There is a balance to be struck between the side-effects and efficacy of chemotherapy. So, it's really a multi-part question. 1) How is she feeling (based on side-effects of treatment, complications of cancer, emotionally, etc.), and 2) how is the cancer doing (the efficacy of the treatment)? These factors often have no relation to each other. For instance, she might be enjoying a period of very few (or manageable) side-effects, as with the Taxol. But if the chemo is ineffective, it's not accurate to say that she's doing well. Likewise, if the the chemo is really kicking her butt, but it's shrinking the tumors, it's hard to say things are looking good. Also, she can feel really lousy for days on end, then have a brief reprieve from the nausea. If you ask me how she's doing, I could answer that she's feeling lousy, but right now, she's feeling pretty good. There is also an emotional aspect to this, and that adds another layer of complexity to the seemingly simple question, "how is Marye doing?"
I hope that makes sense. As the name of this blog is "Marye Update", I try to give an accurate sense of how she is doing. Hopefully, you can understand the factors that go into trying to answer that question. Having said all that, please don't stop asking about her. It is both uplifting and humbling to know that there are so many people who care enough to read this blog and ask about her. But, when you do ask, just understand that it's not always an easy question to answer, and you might get more than you expected.
So, with all that in mind, here's how she is doing: she has been feeling pretty weak, most likely due to the weekly chemotherapy treatments. Hopefully, the break this week will give her a chance to recover a bit. Also, she has been somewhat achy, and I'm concerned that that may be from the tumors on her spine. As for efficacy, she is scheduled for a CT and bone scan in February, so we won't know anything about that until then. The fact that she's taken 4 treatments in a row gives us hope that the cancer is shrinking. And although she is not suffering the severe side-effects of the gemcitabine, she never really feels great. That said, she does have good days and is often able to get some chores done and do her knitting. I'll post again next week to update on her blood counts and chemo. Thanks for reading.
-Chris
Saturday, January 19, 2013
New Year, New Drug, New Outlook
Well, it's been nearly a month since I last posted an update, so you might be thinking that it's been relatively quiet. That's sort of true. We've had a fair amount of activity, but, for the first time in a long while, it has been quite peaceful. When I last posted, Marye was still suffering the awful side-effects of the Gemcitabine. We were told that this is a very mild chemo and that most patients tolerate it well. Of course, Marye fell into the small percentage of people who got sick from the drug. She suffered terrible nausea with actual vomiting, and a lot of felling lousy, generally. After the New Year, we were very hesitant to continue on the same course, and Dr. Riley agreed. So, on to the next weapon in the chemo arsenal -- Navelbine. A plant alkoid, like Taxol, and others, Navelbine is also advertised as being very mild. So mild, in fact, that it is generally given weekly. This is more frequent than Marye has ever received treatment. Her previous treatments have all been bi- or tri-weekly.
She got her first dose of the Navelbine on Jan. 3rd. Interestingly, it is also a very quick infusion. The entire dose is given via gravity drip from a small bag and takes 6-15 minutes. So, although we have to go to the clinic every week, we're there for only a few hours, as opposed to all day with the Taxol and Gemcitabine. The routine is like this: she first gets her port accessed and her blood drawn for lab work. While we're waiting for the bloodwork to come back, Marye gets comfortable in the chemo lounge and starts knitting. It takes about 45 minutes to get the lab reports back and they get sent to the doctor upstairs to verify that everything is ok and she clears Marye for treatment. When that happens, they plug in the chemo bag, it drips for 6-15 minutes, and we're done. Time to de-access the port, and it's off to McCallister's Deli for a Reuben sandwich. What the onc is looking for on the the blood work is liver function, and -- especially with this drug-- blood counts. (More on this later.) Another factoid regarding the Navelbine: it's a vesicant, meaning it causes extensive tissue damage and blistering if it escapes from the vein. So they handle it very carefully. I don't know why it causes damage to tissue (skin), but not to the interior of the vein and heart. But they take it pretty seriously. Of course, the IV is engineered to eliminate the possibility of contact. They insert the infusion plug into the bag and it drips into her port.
Anyway, the great news is, the Navelbine is treating Marye very, very well. Compared to all of the other chemo drugs (with the possible exception of Taxol, which was also very tolerable), this one has very mild side effects. After three treatments, I can recognize a pattern where she may or may not have some nausea on the day of treatment, then she usually bounces back nicely through the rest of the week. She has had the occasional bad day of nausea. But it's nowhere near as frequent as she was experiencing before. It's like the heavy fog of chemo has been lifted after the last few months and her days are much better. That's the good news. And aside from the aforementioned occasional bad day, that's the second best type of news that you can hope for with Stage IV metastatic breast cancer. The only downside to this drug so far, (more on this later) is that being weekly, it is affecting her blood counts. What that means is that her white and red blood cells, hemoglobin, and platelets are dropping every week. This can affect her immune system and energy levels. So, I am extra careful about not bringing home any bugs (we both had our flu shots earlier this year), and her energy level is down. I haven't talked about this to the onc, yet, but this has happened before and there are several possible remedies, including a blood transfusion to boost her counts. She could also take a week off of treatment to give her body a chance to boost itself. This is another benefit of weekly treatments: she is in the clinic every week. If we have questions for the doctor, we're right there, and they're keeping a close eye on her condition.
Ok, that's a lot to absorb. I said I'd address a few things, but I'll save those for another day. To summarize: Marye's new chemo is treating her well. She still has the occasional bad day (1-2 per week), but overall, she's feeling much better than she has for the past few months. She is scheduled for a CT and bone scan in March, so we'll know then how effective the chemo is. Until then, I'm expecting things to stay quiet. Blissfully quiet.
-Chris
She got her first dose of the Navelbine on Jan. 3rd. Interestingly, it is also a very quick infusion. The entire dose is given via gravity drip from a small bag and takes 6-15 minutes. So, although we have to go to the clinic every week, we're there for only a few hours, as opposed to all day with the Taxol and Gemcitabine. The routine is like this: she first gets her port accessed and her blood drawn for lab work. While we're waiting for the bloodwork to come back, Marye gets comfortable in the chemo lounge and starts knitting. It takes about 45 minutes to get the lab reports back and they get sent to the doctor upstairs to verify that everything is ok and she clears Marye for treatment. When that happens, they plug in the chemo bag, it drips for 6-15 minutes, and we're done. Time to de-access the port, and it's off to McCallister's Deli for a Reuben sandwich. What the onc is looking for on the the blood work is liver function, and -- especially with this drug-- blood counts. (More on this later.) Another factoid regarding the Navelbine: it's a vesicant, meaning it causes extensive tissue damage and blistering if it escapes from the vein. So they handle it very carefully. I don't know why it causes damage to tissue (skin), but not to the interior of the vein and heart. But they take it pretty seriously. Of course, the IV is engineered to eliminate the possibility of contact. They insert the infusion plug into the bag and it drips into her port.
Anyway, the great news is, the Navelbine is treating Marye very, very well. Compared to all of the other chemo drugs (with the possible exception of Taxol, which was also very tolerable), this one has very mild side effects. After three treatments, I can recognize a pattern where she may or may not have some nausea on the day of treatment, then she usually bounces back nicely through the rest of the week. She has had the occasional bad day of nausea. But it's nowhere near as frequent as she was experiencing before. It's like the heavy fog of chemo has been lifted after the last few months and her days are much better. That's the good news. And aside from the aforementioned occasional bad day, that's the second best type of news that you can hope for with Stage IV metastatic breast cancer. The only downside to this drug so far, (more on this later) is that being weekly, it is affecting her blood counts. What that means is that her white and red blood cells, hemoglobin, and platelets are dropping every week. This can affect her immune system and energy levels. So, I am extra careful about not bringing home any bugs (we both had our flu shots earlier this year), and her energy level is down. I haven't talked about this to the onc, yet, but this has happened before and there are several possible remedies, including a blood transfusion to boost her counts. She could also take a week off of treatment to give her body a chance to boost itself. This is another benefit of weekly treatments: she is in the clinic every week. If we have questions for the doctor, we're right there, and they're keeping a close eye on her condition.
Ok, that's a lot to absorb. I said I'd address a few things, but I'll save those for another day. To summarize: Marye's new chemo is treating her well. She still has the occasional bad day (1-2 per week), but overall, she's feeling much better than she has for the past few months. She is scheduled for a CT and bone scan in March, so we'll know then how effective the chemo is. Until then, I'm expecting things to stay quiet. Blissfully quiet.
-Chris
Saturday, December 22, 2012
One hell of a year
It's been three weeks and two chemo treatments since I last posted. There's a lot to go over, and of course, almost none of it is good. As you recall, we were watching how the gemcitabine (Gemzar) was affecting Marye after her liver explosion in mid-November. The oncologist tells me that this chemo is so mild that most women don't need any anti-emetic at all while using it. But we've had no such luck. The treatment in late November and now the latest one (last Thursday) were both brutal. She started vomiting almost immediately and it lasted through the weekend. Still, I wasn't convinced that the chemo was causing it because she had some pretty serious nausea for the two weeks between treatments and it was unclear if her recent liver inflammation was to blame. Well, after last week, it's clear that the chemo is at least mostly responsible. The lab work shows her liver is back to functioning almost normally, but she gets really sick right after the treatment. Along with the nausea, she has a complete lack of energy and sleeps over 20 hours per day. On Sunday, she finally got up and took a shower. But it didn't end well as she fainted soon after. Fortunately, I was right there to catch her and bring her to the floor so she didn't fall. For about a minute I couldn't get her to respond to me, so I called 911. When the EMTs arrived, they checked her vital signs and Marye had begun to perk up a bit, so we didn't go to the hospital. I was ready, though, to take her downtown if that happened again.
By Monday, she started to feel a little better and was able to move around some, although her stomach was still pretty upset. I talked to the onc and let her know what was going on with the constant nausea and the passing out and stuff. Dr. Riley was fairly concerned about the whole thing and decided to set Marye up for an MRI on her brain to see if the cancer had spread there. Apparently, when there is uncontrolled nausea, that is a pretty good indicator of pressure on the brain caused by tumors. In the meantime, Marye was still vomiting all week, which was different than the last treatment, when she would feel sick, but not actually vomit. So I was pretty anxious about what the MRI would reveal. We decided to stop the chemo for a few weeks to give Marye a break and reevaluate after the MRI. Dr. Riley also wanted to give Marye some IV fluids and give her a bag of Zofran to help with the nausea. That was scheduled for Thursday.
We went down on Wednesday for the MRI, and Marye was feeling really lousy through the whole thing. On Thursday, I took her to the cancer clinic where they plugged her in and gave her the Zofran and IV solution. Although we weren't scheduled to see the oncologist, she appeared in the clinic around 5:30 pm, and she didn't look happy. Apparently, the MRI showed several punctates in Marye's brain that are concerning. They are very small (< 2.5 mm) and might be metastases, or nothing at all. If they are cancer, because the chemo drugs cannot penetrate the blood-brain barrier, the only way to fight it is with radiation. It's important to note that Dr. Riley wasn't convinced that this is cancer, and even if it is, the lesions are too small to be causing the nausea. Well, with Marye still feeling really bad, the doctor convinced me (and I, in turn, convinced Marye) that the best move was to just admit her into the hospital for a day or two to get a handle on the nausea. This would also allow the onc to keep a close eye on her liver, since it took a bit of a downturn since last week, based on Thursday's labs. Of course, this went over like a lead balloon with Marye. Laying in a hospital bed is not how she wants to spend the weekend before Christmas, or any weekend, for that matter. The same goes for me.
On Friday morning, Marye woke up and did actually feel a bit better. She at least put on a good show and we decided that anything that the hospital could do, we could get done outpatient. Of course, this isn't exactly true, since the clinic is now closed until after Christmas. But we figured that as long as she's not sick, she can stay home and stay hydrated. If she starts puking, I'll run her downtown to the ER. If she can hold out until next week, they can take labs and give her IV fluids and Zofran in the clinic, outpatient style. The only real good news from the past few weeks was that the tumor markers actually went down from last month. So, despite the horrible side-effects of the gemcitabine, it looks like it's actually effective on the cancer.
Moving forward, we need to make a decision right after the new year on what drug we want to use. If we stick with the gemcitabine, the side-effects are so horrible that her quality of life is complete crap. On the other hand, if we go to a different drug, there's no guarantee that the side-effects will be better or it will be effective. So, again, there's a balance to be struck between the efficacy and toxicity of the chemotherapy. As for the spots on the brain, the radiation oncologist recommends doing another MRI in two months to see if they grow. If they do, then we'll have to start with radiation, since no chemo can get to the brain. It sucks that the cancer can get through the blood-brain barrier, but the chemo cannot. It figures. In any event, unless something major happens, I don't anticipate another update until the first week of January. We are planning a quiet Christmas and New Year. I hope you all, too, have a nice holiday season.
-Chris
By Monday, she started to feel a little better and was able to move around some, although her stomach was still pretty upset. I talked to the onc and let her know what was going on with the constant nausea and the passing out and stuff. Dr. Riley was fairly concerned about the whole thing and decided to set Marye up for an MRI on her brain to see if the cancer had spread there. Apparently, when there is uncontrolled nausea, that is a pretty good indicator of pressure on the brain caused by tumors. In the meantime, Marye was still vomiting all week, which was different than the last treatment, when she would feel sick, but not actually vomit. So I was pretty anxious about what the MRI would reveal. We decided to stop the chemo for a few weeks to give Marye a break and reevaluate after the MRI. Dr. Riley also wanted to give Marye some IV fluids and give her a bag of Zofran to help with the nausea. That was scheduled for Thursday.
We went down on Wednesday for the MRI, and Marye was feeling really lousy through the whole thing. On Thursday, I took her to the cancer clinic where they plugged her in and gave her the Zofran and IV solution. Although we weren't scheduled to see the oncologist, she appeared in the clinic around 5:30 pm, and she didn't look happy. Apparently, the MRI showed several punctates in Marye's brain that are concerning. They are very small (< 2.5 mm) and might be metastases, or nothing at all. If they are cancer, because the chemo drugs cannot penetrate the blood-brain barrier, the only way to fight it is with radiation. It's important to note that Dr. Riley wasn't convinced that this is cancer, and even if it is, the lesions are too small to be causing the nausea. Well, with Marye still feeling really bad, the doctor convinced me (and I, in turn, convinced Marye) that the best move was to just admit her into the hospital for a day or two to get a handle on the nausea. This would also allow the onc to keep a close eye on her liver, since it took a bit of a downturn since last week, based on Thursday's labs. Of course, this went over like a lead balloon with Marye. Laying in a hospital bed is not how she wants to spend the weekend before Christmas, or any weekend, for that matter. The same goes for me.
On Friday morning, Marye woke up and did actually feel a bit better. She at least put on a good show and we decided that anything that the hospital could do, we could get done outpatient. Of course, this isn't exactly true, since the clinic is now closed until after Christmas. But we figured that as long as she's not sick, she can stay home and stay hydrated. If she starts puking, I'll run her downtown to the ER. If she can hold out until next week, they can take labs and give her IV fluids and Zofran in the clinic, outpatient style. The only real good news from the past few weeks was that the tumor markers actually went down from last month. So, despite the horrible side-effects of the gemcitabine, it looks like it's actually effective on the cancer.
Moving forward, we need to make a decision right after the new year on what drug we want to use. If we stick with the gemcitabine, the side-effects are so horrible that her quality of life is complete crap. On the other hand, if we go to a different drug, there's no guarantee that the side-effects will be better or it will be effective. So, again, there's a balance to be struck between the efficacy and toxicity of the chemotherapy. As for the spots on the brain, the radiation oncologist recommends doing another MRI in two months to see if they grow. If they do, then we'll have to start with radiation, since no chemo can get to the brain. It sucks that the cancer can get through the blood-brain barrier, but the chemo cannot. It figures. In any event, unless something major happens, I don't anticipate another update until the first week of January. We are planning a quiet Christmas and New Year. I hope you all, too, have a nice holiday season.
-Chris
Thursday, November 29, 2012
Two in one
Hi folks! Hope everyone is well. I have two updates on Marye from the past week or so. Thanksgiving week came in with a bang as Marye was suffering from pretty serious nausea and vomiting after her last chemo (the week before Turkey Day.) She spent Saturday and Sunday in bed, not feeling well at all. By Monday, she had had enough of laying around and wanted to go grocery shopping. But as soon as I got her into the sunlight, I could see that she was completely jaundiced. I mean, she was doing her best impersonation of a pumpkin pie. That's the best way to describe her color. I don't know if the jaundice just came up on Monday, or that I hadn't noticed it at home under the yellow lights in the house. Anyway, we had company coming and Thanksgiving dinner to plan, so we went into the grocery store. Thanks to my Star Trek-like communicator (smart phone), I was able to shoot off an email to her oncologist right away with this new development. In the meantime, we filled a shopping cart full of food, although we hadn't gotten to the turkey, yet. Twenty minutes later, Marye was sick enough that she just needed to go home. I left the (full) cart in the aisle and took Marye home, planning on zipping right back to the store to pick up where I left off, and hoping that the milk I had in the cart hadn't spoiled too much.
By this time, though, Dr. Riley responded that if Marye was really jaundiced, she needed to get her blood drawn. Right now. Of course. So, the kid at the Meijer was forced to restock all of my groceries as I had effectively abandoned them and took Marye downtown to the cancer clinic. An hour later, we got the results of the blood work, and, as expected, her bilirubin was really elevated at 6.9 (normal is <1.0). A few calls to Dr. Vitale's office, and we were ready to head to Norton Hospital for an emergency ERCP. This was a good thing, since I wasn't sure that the doctor would even be available, with the approaching holiday and all. In short, Marye's stent was blocked, thus the elevated bilirubin. We were really lucky to get the ERCP done when we did, since that condition does not get better with time. Had we waited another day (or six), she could have easily been down with another septic infection from the stent. The ERCP went smoothly and I got her home that night around 11:30 pm.
It took a few days for the bilirubin and jaundice to clear, but she did start feeling somewhat better. It actually took longer than I expected, but it did start to clear up by the weekend. Our company came, and we had a nice holiday. Marye was a trouper, too. She did many of the side dishes for Thanksgiving. Good thing, too, since I haven't figured out those peas and onions, yet.
Since she was pretty shaky last week, we decided to hold off on the chemo. So, that was today. She got her blood drawn and eventually did get the treatment. However, Dr. Riley was not thrilled with the blood work since Marye's liver is not functioning well. I'm not sure of the physiology of it, but the enzymes and the bilirubin were all pretty high. The bilirubin is down from 6.9 to 1.9. That's an improvement from last week, but still a concern. The onc thinks that her liver is still recovering from the irritation last week. I can buy that. She bumped back next week's chemo to the following week and we'll check her labs again on Thursday. As of this writing, Marye is having some nausea that we (again) are attributing to the chemo today. We'll see. She's not jaundiced and I'll check her in the sunlight tomorrow to keep an eye on that. She's had ERCPs in the past that did not go well or caused infection, so I know what to look for and won't hesitate to bring her downtown if she gets any fever or anything.
Moving forward, we're just watching her liver and hoping that it settles down after last week's shenanigans, and she should be back on a regular chemo schedule in the weeks after that. The ERCP that was scheduled for Dec. 17 is no longer necessary. Otherwise, things are just moving along.
By this time, though, Dr. Riley responded that if Marye was really jaundiced, she needed to get her blood drawn. Right now. Of course. So, the kid at the Meijer was forced to restock all of my groceries as I had effectively abandoned them and took Marye downtown to the cancer clinic. An hour later, we got the results of the blood work, and, as expected, her bilirubin was really elevated at 6.9 (normal is <1.0). A few calls to Dr. Vitale's office, and we were ready to head to Norton Hospital for an emergency ERCP. This was a good thing, since I wasn't sure that the doctor would even be available, with the approaching holiday and all. In short, Marye's stent was blocked, thus the elevated bilirubin. We were really lucky to get the ERCP done when we did, since that condition does not get better with time. Had we waited another day (or six), she could have easily been down with another septic infection from the stent. The ERCP went smoothly and I got her home that night around 11:30 pm.
It took a few days for the bilirubin and jaundice to clear, but she did start feeling somewhat better. It actually took longer than I expected, but it did start to clear up by the weekend. Our company came, and we had a nice holiday. Marye was a trouper, too. She did many of the side dishes for Thanksgiving. Good thing, too, since I haven't figured out those peas and onions, yet.
Since she was pretty shaky last week, we decided to hold off on the chemo. So, that was today. She got her blood drawn and eventually did get the treatment. However, Dr. Riley was not thrilled with the blood work since Marye's liver is not functioning well. I'm not sure of the physiology of it, but the enzymes and the bilirubin were all pretty high. The bilirubin is down from 6.9 to 1.9. That's an improvement from last week, but still a concern. The onc thinks that her liver is still recovering from the irritation last week. I can buy that. She bumped back next week's chemo to the following week and we'll check her labs again on Thursday. As of this writing, Marye is having some nausea that we (again) are attributing to the chemo today. We'll see. She's not jaundiced and I'll check her in the sunlight tomorrow to keep an eye on that. She's had ERCPs in the past that did not go well or caused infection, so I know what to look for and won't hesitate to bring her downtown if she gets any fever or anything.
Moving forward, we're just watching her liver and hoping that it settles down after last week's shenanigans, and she should be back on a regular chemo schedule in the weeks after that. The ERCP that was scheduled for Dec. 17 is no longer necessary. Otherwise, things are just moving along.
Friday, November 16, 2012
This post has no title
I'm tired of trying to come up with creative post titles that say the same thing week after week. Sorry. We got the results of Marye's bone and CT scans yesterday. The results are mixed. In her liver, the main tumor remains unchanged at 6 cm, the smaller tumors have gotten smaller, and the cancer in her spine has grown. I wondered if this is normal (that the chemo would work on some cancer but not all of it), and Dr. Riley told me that it is. Normally, she would keep her on the Xeloda, since it's working fairly well on the cancer in the liver, and boost that with some radiation to her spine to keep that from getting worse. But since Marye was very unhappy with the side-effects of the Xeloda, we went ahead and changed chemo and will hold off on the radiation to see if the new drugs have any effect. Really, since the Xeloda wasn't working on all of the cancer, we probably would have had to come off of it after the next CT scan, anyway. So, two down (chemo drugs, that is.) The good news is, Marye is not feeling any pain in her back from the lesions on her spine. The doctor was surprised by this, and I'm glad, too. If her back does start hurting, she will get more powerful pain meds and probably some radiation, too, to treat that cancer directly. The other good news is that many of the symptoms that Marye was feeling lately have eased, so it looks like the Xeloda was, indeed, responsible for them.
Moving on, Dr. Riley has prescribed Gemcitabine, aka Gemzar as the next round of chemo. It is an infusion that Marye will get for two weeks, then a week off. This is supposedly a very mild drug, so the side-effects should be minimal, and her hair will continue to grow back. She's no longer bald! Also, the schedule is flexible, so she could go two (weeks) on, one off; every other week; etc. It depends on how she handles the side-effects and of course, its efficacy. To that point, there will be a new CT scan the first week of January. So until then, she'll have to go down and get the chemo every week or so. Add in the (still) monthly Xgeva shots for bone strength and the ERCP on Dec. 17 to replace the stent, and it's going to be a busy holiday season. Remember the Xgeva shot is to strengthen the bones since she has cancer in her spine. It's an osteoporosis drug like Boniva. This is not like the Neulasta that she was taking to spur white-blood cell growth in the bone marrow. That drug was for general immune system boost, not bone strength, but it caused a lot of pain in her bones. The Xgeva doesn't seem to have any negative side-effects.
Ok, one more thing. I usually mention the overwhelming fatigue that Marye suffers from. I usually attribute this to the chemotherapy, but with Marye not having any chemo in the past few weeks, I again asked Dr. Riley about this. She explained that this is a condition called Cancer-Related Fatigue and that the vast majority of cancer patients experience it. A little research reveals myriad authoritative links and scholarly research on the condition. The bottom line is, there is no definitive cause. It can come from the chemo, or the inherent pain from some cancers. It could also come from the metabolic drain that the cancer tumors cause --basically, the tumors are robbing energy from the rest of the body, -- or even hypothyroidism. (That last one is something that Dr. Riley will check during the next blood test.) Of course, it could be from a combination of all of these factors. The only treatment strategies are things that she has tried: Ritalin, caffeine, rest, shrink the tumor, etc. Other than that, it's just something that cancer patients have to deal with.
I bring this up because I know that I mention her fatigue every single post. I hate to sound like a broken record, and frankly, who among us doesn't feel tired most of the time? So, I won't mention it as much in the future. But the whole point of this blog is to pass on information on how Marye is feeling, and to ignore the fatigue is to deny a major part of this experience. It's debilitating and not unusual for her to spend a whole day, or two or three, in bed, utterly unable to get up. That is one of the most profound effects of having cancer for a lot of people, and probably the most distressing thing to her. I'm not happy that there really is no medical answer to this, but giving it a name and knowing how prevalent it is among cancer patients at least makes me understand it more -- and that helps. It takes a lot of energy to keep holding out hope that "the next chemo drug" or "upping the Ritalin dose" will ease the fatigue problem, only to be disappointed once again.. So it is now something that I know that we have to accept and continue to work into our lives.
Whew, I wrote a book here, but there was a lot to say. The summary: Marye's CT scan wasn't great, but it wasn't all bad. The new chemo should be ok, although the fatigue will continue. Next CT scan is in early January, ERCP is on Dec. 17, near weekly visits to the cancer clinic for various treatments between now and then. Overall, Marye is feeling ok and sleeping a lot. And she's happy. I think that that is the biggest take-away for me. She's still happy.
Moving on, Dr. Riley has prescribed Gemcitabine, aka Gemzar as the next round of chemo. It is an infusion that Marye will get for two weeks, then a week off. This is supposedly a very mild drug, so the side-effects should be minimal, and her hair will continue to grow back. She's no longer bald! Also, the schedule is flexible, so she could go two (weeks) on, one off; every other week; etc. It depends on how she handles the side-effects and of course, its efficacy. To that point, there will be a new CT scan the first week of January. So until then, she'll have to go down and get the chemo every week or so. Add in the (still) monthly Xgeva shots for bone strength and the ERCP on Dec. 17 to replace the stent, and it's going to be a busy holiday season. Remember the Xgeva shot is to strengthen the bones since she has cancer in her spine. It's an osteoporosis drug like Boniva. This is not like the Neulasta that she was taking to spur white-blood cell growth in the bone marrow. That drug was for general immune system boost, not bone strength, but it caused a lot of pain in her bones. The Xgeva doesn't seem to have any negative side-effects.
Ok, one more thing. I usually mention the overwhelming fatigue that Marye suffers from. I usually attribute this to the chemotherapy, but with Marye not having any chemo in the past few weeks, I again asked Dr. Riley about this. She explained that this is a condition called Cancer-Related Fatigue and that the vast majority of cancer patients experience it. A little research reveals myriad authoritative links and scholarly research on the condition. The bottom line is, there is no definitive cause. It can come from the chemo, or the inherent pain from some cancers. It could also come from the metabolic drain that the cancer tumors cause --basically, the tumors are robbing energy from the rest of the body, -- or even hypothyroidism. (That last one is something that Dr. Riley will check during the next blood test.) Of course, it could be from a combination of all of these factors. The only treatment strategies are things that she has tried: Ritalin, caffeine, rest, shrink the tumor, etc. Other than that, it's just something that cancer patients have to deal with.
I bring this up because I know that I mention her fatigue every single post. I hate to sound like a broken record, and frankly, who among us doesn't feel tired most of the time? So, I won't mention it as much in the future. But the whole point of this blog is to pass on information on how Marye is feeling, and to ignore the fatigue is to deny a major part of this experience. It's debilitating and not unusual for her to spend a whole day, or two or three, in bed, utterly unable to get up. That is one of the most profound effects of having cancer for a lot of people, and probably the most distressing thing to her. I'm not happy that there really is no medical answer to this, but giving it a name and knowing how prevalent it is among cancer patients at least makes me understand it more -- and that helps. It takes a lot of energy to keep holding out hope that "the next chemo drug" or "upping the Ritalin dose" will ease the fatigue problem, only to be disappointed once again.. So it is now something that I know that we have to accept and continue to work into our lives.
Whew, I wrote a book here, but there was a lot to say. The summary: Marye's CT scan wasn't great, but it wasn't all bad. The new chemo should be ok, although the fatigue will continue. Next CT scan is in early January, ERCP is on Dec. 17, near weekly visits to the cancer clinic for various treatments between now and then. Overall, Marye is feeling ok and sleeping a lot. And she's happy. I think that that is the biggest take-away for me. She's still happy.
Saturday, November 3, 2012
A little bit louder and a little bit worse
Hi folks. Not too much information today, but we're watching some things. Marye finished the second round of the Xeloda last week, and this is her "off" week. But she's been complaining of some side-effects from the drug that have been getting worse. No need to get into too much detail here, but she's been feeling generally lousy. So, we saw the oncologist, whose first impression was that Marye looks really good and she's ready to increase the dosage. But Marye really doesn't want to do that. In fact, she wants to drop this therapy altogether and try something else. I have my own thoughts on that, but, I have to keep in mind that no matter how effective the chemo may be, we still have to balance the side effects. If Marye feels terrible all the time, what good is that?
Anyway, Dr. Riley is not convinced that it's the Xeloda that's causing these side effects, but decided to keep Marye off of it for one more week to see. If Marye starts to feel a little better, than we can assume that the Xeloda is to blame and either reduce the dosage or change drugs. The other question is if the Xeloda is even effective against the cancer. Of course, that's really the most important thing. So, we've got a bone and CT scan scheduled for Nov. 15, then an appointment with Dr. Riley to talk about the next step. If she goes off the Xeloda, the next drug will be another infusion. It's a two weeks on/one week off schedule, so we'll have to deal with that. But until the CT scan, we just have to sit tight.
That's all for now. Unless there is some change in the next few weeks, I probably won't post until Nov. 20th.
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