Marye's life journey ended on Friday, March 1, 2013. It was very peaceful and quiet. I don't know if she could hear or feel anything, but if so, it was me, holding her hands and telling her that I love her. Right before 8 a.m., she took her last breath, and was finally free from pain.
She and I were married for nearly 22 years, and we had the same ups and downs as any married couple. But the truth is, she was my best friend and the light of my life. I often told her that she was the most beautiful person that I ever met, and I'll never know anyone who is more caring and gracious as she. She touched everyone who knew her, and I miss her terribly.
I'd like to thank everyone who has offered their kind words and support over the course of Marye's illness. It meant so much to both of us that she had so many people who cared for her. Since her passing, I'm continuing to receive many messages of support, and I appreciate each one. I'm so grateful that I had her in my life and that I was able to be with her throughout this ordeal, right to the very end.
Sunday, March 3, 2013
Tuesday, February 26, 2013
Hospice
We've been very busy since my last post on Saturday. Remember, we had gotten the lab reports detailing the damage being done to Marye's liver due to the heart failure. She had a rough weekend with a lot of pain, although some of the measures they took to ease the pressure on her heart did appear to be working. On Sunday night, although she was heavily medicated, she was still alert and even talked to her mother on the phone.
By Monday, however, things started moving downward, once again. She was in a lot of pain, and either due to the various internal organ issues, the large doses of pain meds, or both, Marye was fairly unresponsive. The day that Dr. Riley had warned me about had arrived. It was time to worry less about treating the illness and focus more on making Marye comfortable. She recommended inpatient hospice care to ease Marye's transition. It was truly my hope to be able to get her home one last time, but it wasn't meant to be. She needs too much attention. We also discussed dedicated hospice facilities (there are several within a mile of here), but decided that instead of putting her in an ambulance to transport to another facility, they could meet her needs right here at U of L.
On Monday afternoon, we turned off all treatments for cancer, heart failure, liver failure, etc., and began focusing solely on pain management. Marye has a liberal prescription for morphine and ativan, and she doesn't have to fight anymore. By Monday evening, she was even less responsive and we worked hard to get her pain under control. By Tuesday morning, she finally looked comfortable.
As of Tuesday evening, Marye is mostly unable to communicate with me, although I am certain that she can hear me. She sometimes gives me an approving (or unapproving) grunt. She is sleeping, and Dr. Riley is confident that she is not feeling any pain. I hope she's right.
By Monday, however, things started moving downward, once again. She was in a lot of pain, and either due to the various internal organ issues, the large doses of pain meds, or both, Marye was fairly unresponsive. The day that Dr. Riley had warned me about had arrived. It was time to worry less about treating the illness and focus more on making Marye comfortable. She recommended inpatient hospice care to ease Marye's transition. It was truly my hope to be able to get her home one last time, but it wasn't meant to be. She needs too much attention. We also discussed dedicated hospice facilities (there are several within a mile of here), but decided that instead of putting her in an ambulance to transport to another facility, they could meet her needs right here at U of L.
On Monday afternoon, we turned off all treatments for cancer, heart failure, liver failure, etc., and began focusing solely on pain management. Marye has a liberal prescription for morphine and ativan, and she doesn't have to fight anymore. By Monday evening, she was even less responsive and we worked hard to get her pain under control. By Tuesday morning, she finally looked comfortable.
As of Tuesday evening, Marye is mostly unable to communicate with me, although I am certain that she can hear me. She sometimes gives me an approving (or unapproving) grunt. She is sleeping, and Dr. Riley is confident that she is not feeling any pain. I hope she's right.
Saturday, February 23, 2013
Saturday
Things are happening very quickly. On Thursday night, Marye had a very difficult time breathing. It was very shallow and painful, and we kept her pretty heavily sedated all night, though it didn't really bring her much peace.
On Friday, we saw the cardio team about the heart failure. The heart enzyme tests did not show a recent heart attack, so it's likely that the adriamycin she took back in 2005 is what caused it. Since her heart is not pumping well, she was retaining a lot of fluid, which is what was making it so hard to breathe. The other problem they found yesterday was that her liver enzymes climbed pretty dramatically, from below 200 to over 800. The doctors attributed this to the excess fluid that was built up and not flushing through the liver. To combat all of this, they gave her a drug to dilate the blood vessels into and out of the heart. That should make it easier for the weakened heart to pump. There is a delicate balance though, because it can lower her blood pressure, which is something they don't want to do. They also gave her Lasix, a diruetic, to help her pass the fluid.
By Friday afternoon, she started to pass water, her blood pressure remained stable, and she was breathing a lot easier. She complains of general, achy pain, but cannot really put her finger on anything specific, so we're continuing with the Dilaudid for pain. Overall, she looked somewhat better on Friday, so we figured the lasix and drugs to dilate the blood vessels were helping.
After today's blood work (they take blood every morning), I was told that someone ordered another CT scan of her liver. The GI doctor came in to say that instead of the liver enzymes going down as expected, they jumped to 3,000. There are several possible explanations, but the most likely one is that there is decreased blood flow to the liver, causing some necrosis and the enzymes being released in large numbers. My thought was that this was due to the recent diagnosis of heart failure, but he said, no, it wouldn't jump so dramatically so fast. He's thinking either a) there is a clot in the vessels that feed the liver, or b) there are swollen lymph nodes that may be causing a blockage. Hence, the CT scan. Depending on what they find, there will be some plan to deal with it. I don't know what they might come up with, but they do have ways of dealing with it. How effective they are is another story.
Overall, it looks less likely that she's going to rally through this. I was hoping that she might get to come home, even for a bit. I'm not very confident of that, now. Her liver is not "shutting down" per se, but it is suffering from many of the side-effects of cancer. They're all interrelated, and she just doesn't have the strength to fight all of it. Even if they get the water off and the blockage to the liver cleared (two pretty big "ifs"), she still has pretty severe heart failure. At this point, we're just trying to keep her comfortable while we deal with each issue.
I'm sure I'll be posting again very soon.
-Chris
On Friday, we saw the cardio team about the heart failure. The heart enzyme tests did not show a recent heart attack, so it's likely that the adriamycin she took back in 2005 is what caused it. Since her heart is not pumping well, she was retaining a lot of fluid, which is what was making it so hard to breathe. The other problem they found yesterday was that her liver enzymes climbed pretty dramatically, from below 200 to over 800. The doctors attributed this to the excess fluid that was built up and not flushing through the liver. To combat all of this, they gave her a drug to dilate the blood vessels into and out of the heart. That should make it easier for the weakened heart to pump. There is a delicate balance though, because it can lower her blood pressure, which is something they don't want to do. They also gave her Lasix, a diruetic, to help her pass the fluid.
By Friday afternoon, she started to pass water, her blood pressure remained stable, and she was breathing a lot easier. She complains of general, achy pain, but cannot really put her finger on anything specific, so we're continuing with the Dilaudid for pain. Overall, she looked somewhat better on Friday, so we figured the lasix and drugs to dilate the blood vessels were helping.
After today's blood work (they take blood every morning), I was told that someone ordered another CT scan of her liver. The GI doctor came in to say that instead of the liver enzymes going down as expected, they jumped to 3,000. There are several possible explanations, but the most likely one is that there is decreased blood flow to the liver, causing some necrosis and the enzymes being released in large numbers. My thought was that this was due to the recent diagnosis of heart failure, but he said, no, it wouldn't jump so dramatically so fast. He's thinking either a) there is a clot in the vessels that feed the liver, or b) there are swollen lymph nodes that may be causing a blockage. Hence, the CT scan. Depending on what they find, there will be some plan to deal with it. I don't know what they might come up with, but they do have ways of dealing with it. How effective they are is another story.
Overall, it looks less likely that she's going to rally through this. I was hoping that she might get to come home, even for a bit. I'm not very confident of that, now. Her liver is not "shutting down" per se, but it is suffering from many of the side-effects of cancer. They're all interrelated, and she just doesn't have the strength to fight all of it. Even if they get the water off and the blockage to the liver cleared (two pretty big "ifs"), she still has pretty severe heart failure. At this point, we're just trying to keep her comfortable while we deal with each issue.
I'm sure I'll be posting again very soon.
-Chris
Thursday, February 21, 2013
Thursday
This will be short... On Monday, Marye got admitted to U of L for another gall bladder attack. Pain, vomiting, etc. They went right to work on pain management and antibiotics to keep the infection away. Her blood work and cultures don't indicate any infection, but her white blood cells are very low and dropping, most likely due to the chemo. At this point, we're looking at gall bladder attacks with increased frequency and very weak blood counts.
Today, they did the echo cardiogram to look at the fluid around the heart. Also, she's been struggling with her breathing. So, tonight, Dr. Riley informed us that Marye is in heart failure, with an Ejection Fraction (EF) of 15% (normal is between 55-70%). This could be caused by any number of factors: the adriamycin she took back in 2005, the cancer she has now. No way of telling... doesn't really matter. It's irreversible. It also explains a lot of her fatigue and shortness of breath lately.
We have a DNR order on her.
That said, she's been known to rally from these difficult periods, so we're not throwing in the towel. In spite of everything, the gall bladder actually appears to be improving, so we're trying to wean her off some of the heavier pain meds and get her back on stuff that she can take at home. We'll talk to the cardio team here on Friday and see what they have to say about meds for the heart failure. If she does get to go home, we'll set up hospice again and reassess what kind of chemo schedule she can handle.
She's still fighting, but she's tired. I'll post an update again, soon.
-Chris
Today, they did the echo cardiogram to look at the fluid around the heart. Also, she's been struggling with her breathing. So, tonight, Dr. Riley informed us that Marye is in heart failure, with an Ejection Fraction (EF) of 15% (normal is between 55-70%). This could be caused by any number of factors: the adriamycin she took back in 2005, the cancer she has now. No way of telling... doesn't really matter. It's irreversible. It also explains a lot of her fatigue and shortness of breath lately.
We have a DNR order on her.
That said, she's been known to rally from these difficult periods, so we're not throwing in the towel. In spite of everything, the gall bladder actually appears to be improving, so we're trying to wean her off some of the heavier pain meds and get her back on stuff that she can take at home. We'll talk to the cardio team here on Friday and see what they have to say about meds for the heart failure. If she does get to go home, we'll set up hospice again and reassess what kind of chemo schedule she can handle.
She's still fighting, but she's tired. I'll post an update again, soon.
-Chris
Saturday, February 16, 2013
Cancer abhors a vacuum
The week started out busy with Marye's scans on Monday. She was scheduled for a CT scan, bone scan, and a brain MRI to follow-up on the punctates that were discovered in December. We had pretty much forgotten all about these since Dr. Riley and the radiation oncologist (hereinafter, radonc) were confident that they weren't cancerous. They just wanted to get another scan to make sure. On Tuesday, Dr. Riley called with the news that, yes, of course they are malignant, having grown to a maximum size of 3.5 mm and showing swelling of the brain tissue around them. Obviously, this was not the news we were expecting or hoping for. Dr. Riley asked about any symptoms that may be caused by brain tumors: loss of balance, slurred speech, etc. Everything was negative, so the lesions aren't causing any problems, yet. The only good news was that the CT and bone scans both showed improvement in the liver and bone lesions. There are still around 19 tumors in the liver, specifically, but they are shrinking (or stable) and showing signs of decreased central density. The explanation for this whole picture is that the Navelbine is actually effective, but since it cannot penetrate the blood-brain barrier, the metastasis in the brain will not be affected. The solution? Radiation. The consultation with the radonc was set up for Tuesday.
After a stressful evening of wondering about radiation to the brain, I decided that we just need to relax until we see the doctor and get our questions answered. (Tip: Don't use the internet for medical advice.) On Wednesday, we met Dr. Draygun down at the cancer center and learned about brain lesions and radiation. Marye has four lesions in her brain that the radonc wants to treat and at least two more punctates that are too small to treat right now. Essentially, there are two treatment options: whole-brain radiation and the CyberKnife. Apparently, this thing is the Egg McMuffin of radiation oncology. Instead of radiating the entire brain over a number of days, the cyberknife is a highly precise beam that hits the tumors without touching the surrounding tissue, so there should be very few side-effects. Good news, right? Yes. Even better is that since they are still so small, each lesion will need only one blast of radiation. The downside is that because the radiation beam hits only the tumors, the ones that haven't yet blossomed will need to be treated at some point in the future. If she were to have whole-brain radiation, all of the tumors would be treated at once. Of course, that wouldn't prevent further metastasis and so she may very well need more radiation in the future, anyway. But the side-effects of whole-brain treatment are much more profound over time.
Anyway, back to the CyberKnife. She needs to get another MRI for the procedure. This one is hyper-accurate so they can focus the beam exactly where it needs to be. They also need to make a mask of her head to immobilize it for the treatment. The preparation for this procedure takes a few days, while the treatment for each lesion will last about 15 minutes. Looking forward, Marye will have regular brain MRIs to monitor any more lesions, and she'll get treated for them as necessary. Based on how fast the punctates blossomed into lesions that are big enough to treat, I suspect that she'll be doing this again within the next six months.
Ok, that was Wednesday. The next step was to meet with Dr. Riley on Thursday to go over the other scans and also get the regularly scheduled chemotherapy. Having the worst news (brain lesions) behind us, and already hearing that the liver and bone scans looked better, we were looking forward to some good news. But, cancer had other ideas. Although the liver tumors do, in fact, look better, the CT scan revealed a few potential problems. There is some fluid in the pericardium that may indicate malignancy near the heart. The pericardium is the sac that encases the heart and is filled with fluid to lubricate and nourish the heart muscle. If there are malignant cells there, the fluid will increase and swell. So the CT scan has picked that up. Also, there was some change in the lymph nodes around the heart and lungs that may indicate malignancy. The lymph nodes are the filters of the immune system, and the lymphatic system acts as a conduit for cancer to metastasize throughout the body. During a lumpectomy or mastectomy, the surgeon will take lymph nodes from the armpit and biopsy them. The number of nodes that are "involved" indicates the potential for metastasis. Well, with some funny looking lymph nodes, combined with the fluid around Marye's heart (not to mention the brain lesions), Dr. Riley wants to do a few tests to see if the cancer has spread further. She took blood to check the tumor markers and wants to get an echo cardiogram of the heart. The implications of this are, obviously, that the chemo that we thought was working, might not be.
Again, this was not the news that we expected or hoped for. At this point, I can only deal with one catastrophe at a time, and we're not at all certain that the cancer has spread to her chest. So we'll take care of the brain radiation next week, then schedule the echo of the heart for the following week. By then, we'll know what the tumor markers are, and that will guide Dr. Riley on the next course for the chemo. If the tumor markers are down, she will likely keep Marye on Navelbine for a few more cycles, since she's only been taking it for about a month. It's possible that the drug is working, but it just needs time to catch up with some previous progression of the cancer. Or it could be effective on the liver tumors, but not the other tumors. In the meantime, we'll do the radiation, and Marye gets to take a week off of chemo, which should help her feel a little better. She did get treatment on Thursday, on top of everything. All in all, it's been a pretty tough week.
After a stressful evening of wondering about radiation to the brain, I decided that we just need to relax until we see the doctor and get our questions answered. (Tip: Don't use the internet for medical advice.) On Wednesday, we met Dr. Draygun down at the cancer center and learned about brain lesions and radiation. Marye has four lesions in her brain that the radonc wants to treat and at least two more punctates that are too small to treat right now. Essentially, there are two treatment options: whole-brain radiation and the CyberKnife. Apparently, this thing is the Egg McMuffin of radiation oncology. Instead of radiating the entire brain over a number of days, the cyberknife is a highly precise beam that hits the tumors without touching the surrounding tissue, so there should be very few side-effects. Good news, right? Yes. Even better is that since they are still so small, each lesion will need only one blast of radiation. The downside is that because the radiation beam hits only the tumors, the ones that haven't yet blossomed will need to be treated at some point in the future. If she were to have whole-brain radiation, all of the tumors would be treated at once. Of course, that wouldn't prevent further metastasis and so she may very well need more radiation in the future, anyway. But the side-effects of whole-brain treatment are much more profound over time.
Anyway, back to the CyberKnife. She needs to get another MRI for the procedure. This one is hyper-accurate so they can focus the beam exactly where it needs to be. They also need to make a mask of her head to immobilize it for the treatment. The preparation for this procedure takes a few days, while the treatment for each lesion will last about 15 minutes. Looking forward, Marye will have regular brain MRIs to monitor any more lesions, and she'll get treated for them as necessary. Based on how fast the punctates blossomed into lesions that are big enough to treat, I suspect that she'll be doing this again within the next six months.
Ok, that was Wednesday. The next step was to meet with Dr. Riley on Thursday to go over the other scans and also get the regularly scheduled chemotherapy. Having the worst news (brain lesions) behind us, and already hearing that the liver and bone scans looked better, we were looking forward to some good news. But, cancer had other ideas. Although the liver tumors do, in fact, look better, the CT scan revealed a few potential problems. There is some fluid in the pericardium that may indicate malignancy near the heart. The pericardium is the sac that encases the heart and is filled with fluid to lubricate and nourish the heart muscle. If there are malignant cells there, the fluid will increase and swell. So the CT scan has picked that up. Also, there was some change in the lymph nodes around the heart and lungs that may indicate malignancy. The lymph nodes are the filters of the immune system, and the lymphatic system acts as a conduit for cancer to metastasize throughout the body. During a lumpectomy or mastectomy, the surgeon will take lymph nodes from the armpit and biopsy them. The number of nodes that are "involved" indicates the potential for metastasis. Well, with some funny looking lymph nodes, combined with the fluid around Marye's heart (not to mention the brain lesions), Dr. Riley wants to do a few tests to see if the cancer has spread further. She took blood to check the tumor markers and wants to get an echo cardiogram of the heart. The implications of this are, obviously, that the chemo that we thought was working, might not be.
Again, this was not the news that we expected or hoped for. At this point, I can only deal with one catastrophe at a time, and we're not at all certain that the cancer has spread to her chest. So we'll take care of the brain radiation next week, then schedule the echo of the heart for the following week. By then, we'll know what the tumor markers are, and that will guide Dr. Riley on the next course for the chemo. If the tumor markers are down, she will likely keep Marye on Navelbine for a few more cycles, since she's only been taking it for about a month. It's possible that the drug is working, but it just needs time to catch up with some previous progression of the cancer. Or it could be effective on the liver tumors, but not the other tumors. In the meantime, we'll do the radiation, and Marye gets to take a week off of chemo, which should help her feel a little better. She did get treatment on Thursday, on top of everything. All in all, it's been a pretty tough week.
Sunday, February 10, 2013
Hospital quickie
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
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
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
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