When Marye had her gall bladder attack in January, Dr. Riley (oncologist extraordinaire) explained to me that one worry was that if Marye is able to get back on chemotherapy, she is now weaker and may not bounce back as easily. Unfortunately, that seems to be what is happening. Marye went back on chemo two weeks ago today, and as feared, she hasn't really felt well since.
Like before, there is none of the classic nausea and vommiting due to the chemo, but she has suffered from the same low-grade nausea and upset stomach (two different things) that she's had since January. The first few days after her treatment were actually pretty good, thanks to the high-dose steroid that she takes. But once that wears off, Marye is stuck with the same severe fatigue/general feeling of lousiness that she had before. <sigh>
Last Friday, we had an appointment with Dr. Huber, a palliative care specialist. She is an oncologist, but focuses on quality-of-life issues and trying to manage symptoms and side-effects. Seeing her is a last chance-effort to get a handle on the side-effects. Marye was not complaining too much at the time since I think the steroids were still impacting her and she does feel a little better after being off the aromatase inhibitor. Dr. Huber prescribed Zofran for nausea, since Marye hasn't tried it in years. But after a few days, it doesn't seem to help too much and Marye has not been feeling well, at all. The roller-coaster is in full effect- she'll wake up feeling ok; by early afternoon, however, she's ready to lay down again until about 7-8 pm.
Every once in a while I go back and read this blog to kind of refresh my own memory on what was going on at any particular point in time. And although there have been many times that Marye has been feeling really crummy, reading the blog puts everything back into perspective for me-- specifically, what has been the general trend of her condition. It helps to do that since I tend to get lost in her day-to-day condition and need to take a step back to get an idea of is she improving or not over the long-term. Sadly, it seems that Dr. Riley's assessment in January was fairly accurate: Marye just does not have the strength that she had before and the chemo is taking a real toll. For now, though, chemotherapy is the course we're on. She has another treatment next Thursday and every third week after that. I imagine that after about three or four treatments she'll get a CT scan to see how it's affecting the tumor(s). Then we reassess.
It's going to be a long summer.
Thursday, May 3, 2012
Wednesday, April 18, 2012
As expected
I apoligize for not posting on Friday as promised, but there really was nothing exciting to report. As expected, the surgeon is convinced that treating the cancer is more important than removing Marye's gall bladder right now. He's right, of course. The complications of a cholesystectomy far outweigh any possible benefit from the procedure, especially since she needs to be on chemotherapy as soon as possible. In addition to the other things we already knew, we learned that starting chemo soon after surgery really complicates the healing from the incisions. That makes sense since chemotherapy affects her immune system, which is obviously important anytime they perform major surgery. It would be at least four weeks before she could start chemo, and that's too long. So..... Marye is scheduled to go back on chemo on Thursday morning. This is nothing new- or unexpected.
In my last post, I talked briefly about taking the challenges of cancer and incorporating them into your life without complaining too much. I received a lot of positive feedback from readers of this blog who were moved by that sentiment. So it's with some sadness that I have to report that although I really believed those words when I was writing them, I haven't been feeling that way lately. I know it's natural to go through ups and downs of dealing with a challenge of this magnitude (cancer is but one of any number of situations that present similar challenges), but getting ready for chemo this time has been tough, especially for me.
I think a part of it is that she's been off therapy for a few months, so it was like a mini-remission, of sorts. When this whole thing started, we were told she would need chemotherapy for the rest of her life. Because the cancer metasticized, she would never go into remission. This was something that we knew and accepted. But then she got sick with her gall bladder, and even though that was terrible and she almost died, it gave us something else to focus on besides the cancer, especially since she really couldn't take the chemo. However, that is now over, and the cancer is front and center again. So while it is something that is very familiar to us, it is kind of like running head-first into the brick wall of cancer all over again. Or, more accurately, like I said in my last post, just when you get into a nice rhythm, cancer slaps you in the face to remind you that it is still there.
Anyway, that's where we stand. She's got chemotherapy on Thursday. Her hair will fall out again. The good news is that she doesn't actually fear chemo since she's tolerated it very well, thus far. But there are side-effects-- more fatigue, neuropathy, feeling generally run-down. Also, we've yet to see how she handles it since her gall bladder issues. She's not as strong as she was, so it may affect her more this time around. Time will tell. I should post again sometime over the weekend with an update.
Thanks for listening.
-Chris
In my last post, I talked briefly about taking the challenges of cancer and incorporating them into your life without complaining too much. I received a lot of positive feedback from readers of this blog who were moved by that sentiment. So it's with some sadness that I have to report that although I really believed those words when I was writing them, I haven't been feeling that way lately. I know it's natural to go through ups and downs of dealing with a challenge of this magnitude (cancer is but one of any number of situations that present similar challenges), but getting ready for chemo this time has been tough, especially for me.
I think a part of it is that she's been off therapy for a few months, so it was like a mini-remission, of sorts. When this whole thing started, we were told she would need chemotherapy for the rest of her life. Because the cancer metasticized, she would never go into remission. This was something that we knew and accepted. But then she got sick with her gall bladder, and even though that was terrible and she almost died, it gave us something else to focus on besides the cancer, especially since she really couldn't take the chemo. However, that is now over, and the cancer is front and center again. So while it is something that is very familiar to us, it is kind of like running head-first into the brick wall of cancer all over again. Or, more accurately, like I said in my last post, just when you get into a nice rhythm, cancer slaps you in the face to remind you that it is still there.
Anyway, that's where we stand. She's got chemotherapy on Thursday. Her hair will fall out again. The good news is that she doesn't actually fear chemo since she's tolerated it very well, thus far. But there are side-effects-- more fatigue, neuropathy, feeling generally run-down. Also, we've yet to see how she handles it since her gall bladder issues. She's not as strong as she was, so it may affect her more this time around. Time will tell. I should post again sometime over the weekend with an update.
Thanks for listening.
-Chris
Tuesday, April 10, 2012
The break is over
As I've said in the past, cancer is all about not letting you get too comfortable with your situation. The key to living with cancer is dealing with the constant sense of uncertainty. Just when you think you've got a nice rhythm down, cancer will throw you a curveball, just to remind you that it's there. It is my belief that, no matter how the disease turns out it in the end, it's important to take these curveballs and try to incorporate them into your life. It doesn't do any good to bemoan the many challenges of cancer. It's also not necessarily possible or useful to stay constantly positive. It's tiring and not always based in reality. But it helps if you can take the challenges in stride. Deal with whatever news you get, formulate a plan, implement the plan, and monitor the effects. When the plan stops working- as it always does, eventually- start all over.
Anyway, we got the word today that the tumor markers are rising faster than we'd like. They went from 200 last month (already up from the month before) to 356 this month. We were waiting for this number as it will impact the decision on whether to take out Marye's gall bladder. She is still on the fence about that (balancing the risks vs. the uncertain benefits). Well, it may be that that shipped has sailed. We're going to see Dr. Vitale on Thursday to talk about the surgery. Our first question is, what is the best-case scenario for Marye being strong enough to start chemotherapy. Dr. Riley says that if it's two weeks or so, that would be ok. But if it is much longer- say, six weeks- she'd rather put the gall bladder on the back burner to get the chemo going first. So, the aromatase inhibitor doesn't seem to be working well, and Marye's break from chemo is going to end within the next week or two.
Again, we're still waiting to decide on the gall bladder situation, but it looks like the cancer is going to take top priority for now. I'll post again on Friday after we see Dr. Vitale and talk to the oncologist again.
-Chris
Anyway, we got the word today that the tumor markers are rising faster than we'd like. They went from 200 last month (already up from the month before) to 356 this month. We were waiting for this number as it will impact the decision on whether to take out Marye's gall bladder. She is still on the fence about that (balancing the risks vs. the uncertain benefits). Well, it may be that that shipped has sailed. We're going to see Dr. Vitale on Thursday to talk about the surgery. Our first question is, what is the best-case scenario for Marye being strong enough to start chemotherapy. Dr. Riley says that if it's two weeks or so, that would be ok. But if it is much longer- say, six weeks- she'd rather put the gall bladder on the back burner to get the chemo going first. So, the aromatase inhibitor doesn't seem to be working well, and Marye's break from chemo is going to end within the next week or two.
Again, we're still waiting to decide on the gall bladder situation, but it looks like the cancer is going to take top priority for now. I'll post again on Friday after we see Dr. Vitale and talk to the oncologist again.
-Chris
Friday, March 30, 2012
CT scan, ERCP, and Stents
Good morning, everyone. It's been a busy week inside of Marye's belly. When we last left you, we were waiting the results of the CT scan from last week and she has been suffering through pretty much constant nausea and pain caused by the aggravated gall bladder and gall bladder catheter. Dr. Riley called me early this week to let us know that yes, the tumor has grown- but not by too much. It went from 3.7 cm to around 4.1 cm across. There is also a second, smaller tumor that is roughly 1.5-2.0 cm across. That's not great news, but it's not unexpected since Marye has not been on chemotherapy in over two months and the tumor markers have gone up. Since the cancer is growing, it needs to be addressed; but it is slow-moving, so we have some time to deal with her sick gall bladder before she goes back on chemo.
We started that process on Thursday with another ERCP by Dr. Vitale, Biliary tract doctor, extraordinaire. First, we discussed getting the gall bladder removed to ease her discomfort and give her a better quality of life. Dr. Vitale is not keen on removing it due to the fear of complications and the fact that it is not causing serious problems. According to him, with the inflammation she had/has there, there will be adherences and other abnormalities that raise the risk of cutting her open. He said it will look like "someone poured a bottle of glue all over the gall bladder" and surrounding area. For this reason, it's not possible to do the cholesystectomy laparoscopically. He's going to have to do open surgery, further increasing the risk. Even with the best surgeon (himself), he estimates a 20% chance of complications, with a 30% chance that the procedure won't decrease her discomfort. Remember, she still has a lot of other issues in her abdomen (cancer) that could be the source of the nausea/pain.
On to the procedure: he did the ERCP and allowed me to sit in the control room to observe it live on the monitors. It helps to be educated about these procedures. I felt like a groupie getting backstage at a rock concert. Dr. Vitale's excellent Fellow, Dr. Barr sat with me and narrated during the procedure. I can say it was truly fascinating. Vitale is like a fighter pilot, navigating his way through her GI tract and sending down tools to remove and replace the stent. Pics below! The whole thing took about 20 minutes. Dr. Barr says it would have taken him over an hour!
After the ERCP, I sat with Dr. Vitale again and talked again about removing her gall bladder. Again, he said that he recommends against it "unless he really has to". I explained to him that although it doesn't appear to be causing her any medical issues, she really is uncomfortable and we believe that taking the gall bladder will help that. He conceded that it could be the cause of her nausea/pain and scheduled us for a consultation and follow-up surgery in two weeks. He will do the procedure if she wants it, but he wants to schedule an entire afternoon for her to make sure he has enough time to go slow and do it right. He also wants her to fully understand the risks involved. The two weeks will also give her a little time to see if the new stent might ease her discomfort. Dr. Vitale also removed the catheter from her gall bladder, so that will likely help, as well. She might decide that she's feeling better enough to not need the surgery. If that's the case, we'll go back to focusing on the cancer (chemotherapy). In the meantime, the Aromatase Inhibitor should keep the tumor from growing too quickly and she can get on chemotherapy in another month or so.
On to the pics! You can also check them out on my Picasa photo album.
We started that process on Thursday with another ERCP by Dr. Vitale, Biliary tract doctor, extraordinaire. First, we discussed getting the gall bladder removed to ease her discomfort and give her a better quality of life. Dr. Vitale is not keen on removing it due to the fear of complications and the fact that it is not causing serious problems. According to him, with the inflammation she had/has there, there will be adherences and other abnormalities that raise the risk of cutting her open. He said it will look like "someone poured a bottle of glue all over the gall bladder" and surrounding area. For this reason, it's not possible to do the cholesystectomy laparoscopically. He's going to have to do open surgery, further increasing the risk. Even with the best surgeon (himself), he estimates a 20% chance of complications, with a 30% chance that the procedure won't decrease her discomfort. Remember, she still has a lot of other issues in her abdomen (cancer) that could be the source of the nausea/pain.
On to the procedure: he did the ERCP and allowed me to sit in the control room to observe it live on the monitors. It helps to be educated about these procedures. I felt like a groupie getting backstage at a rock concert. Dr. Vitale's excellent Fellow, Dr. Barr sat with me and narrated during the procedure. I can say it was truly fascinating. Vitale is like a fighter pilot, navigating his way through her GI tract and sending down tools to remove and replace the stent. Pics below! The whole thing took about 20 minutes. Dr. Barr says it would have taken him over an hour!
After the ERCP, I sat with Dr. Vitale again and talked again about removing her gall bladder. Again, he said that he recommends against it "unless he really has to". I explained to him that although it doesn't appear to be causing her any medical issues, she really is uncomfortable and we believe that taking the gall bladder will help that. He conceded that it could be the cause of her nausea/pain and scheduled us for a consultation and follow-up surgery in two weeks. He will do the procedure if she wants it, but he wants to schedule an entire afternoon for her to make sure he has enough time to go slow and do it right. He also wants her to fully understand the risks involved. The two weeks will also give her a little time to see if the new stent might ease her discomfort. Dr. Vitale also removed the catheter from her gall bladder, so that will likely help, as well. She might decide that she's feeling better enough to not need the surgery. If that's the case, we'll go back to focusing on the cancer (chemotherapy). In the meantime, the Aromatase Inhibitor should keep the tumor from growing too quickly and she can get on chemotherapy in another month or so.
On to the pics! You can also check them out on my Picasa photo album.
Tuesday, March 13, 2012
One step back...
I think I've used that post title before. Sorry. Anyway, it's been a while since I posted, so I wanted to give everyone an update. Since the last post, Marye has been feeling ok, relatively speaking. She still suffers from fatigue and lethargy, but nothing concrete that she can put her finger on. That's good in a way, since she's not really having a lot pain. She had blood work done last week, and on Monday we found out that her tumor markers have increased to over 200. The last number we had was 160, so it's definitely moving in the wrong direction. This isn't exactly unexpected, since she hasn't had chemotherapy in about two months. However, she has been on an Aromatase Inhibitor, which stops the producution of estrogen in the body, hopefully starving the tumor of what it needs to grow, but the AI usually takes 4-6 weeks to have any effect. So the question is: do we go back on chemo or give the AI a chance to work?
We'll have an answer in the next week or so. More important than the tumor marker is a CT scan, so we can see exactly what the tumor is doing. We expect that to happen soon. After that, Dr. Riley will consult with Dr. Vitale to decide if Marye is strong enough to go back on chemo. Those conversations are forthcoming, so I expect the next week to fairly busy. One thing about cancer, it never lets you forget who's boss. Just when you get into a rhythm, it pokes you with a stick to get you moving in another direction.
So, that's it for now. Marye is fairly comfortable, aside from the aforementioned fatigue. She's eating well and her hair is actually growing back, much to her chagrin. Of course, that won't last much longer. I hope everyone is well, and you'll be hearing from me soon.
We'll have an answer in the next week or so. More important than the tumor marker is a CT scan, so we can see exactly what the tumor is doing. We expect that to happen soon. After that, Dr. Riley will consult with Dr. Vitale to decide if Marye is strong enough to go back on chemo. Those conversations are forthcoming, so I expect the next week to fairly busy. One thing about cancer, it never lets you forget who's boss. Just when you get into a rhythm, it pokes you with a stick to get you moving in another direction.
So, that's it for now. Marye is fairly comfortable, aside from the aforementioned fatigue. She's eating well and her hair is actually growing back, much to her chagrin. Of course, that won't last much longer. I hope everyone is well, and you'll be hearing from me soon.
Sunday, February 19, 2012
Another long week
Unfortunately, no news is not good news this week. Marye was quite busy with doctor's appointments all week. She started with the pulmonologist and a chest x-ray. There was some fluid in her lung, known as pleural effusion, but it wasn't enough to be worried about. The doctor wants to see her in two months. I'm afraid that's the extent of the good news.
Since she's been home from the hospital, Marye has been suffering from a good amount of pain from her abdomen. We've been attributing that to her sick gall bladder, but it seemed to be getting worse. She was scheduled to see Dr. Riley on Thursday, and the doctor wanted to get a CT scan to see what was going on in Marye's abdomen. So, we did that. The CT scan showed some abcesses in her abdomen that are probably infection. They also took blood to check on the tumor markers to see what the cancer is doing since Marye hasn't had chemotherapy in five weeks (still waiting on the lab results).
Since Marye is scheduled to see Dr. Vitale on Tuesday about the gall bladder drain tube, Dr. Riley prescribed two fairly generic antibiotics to hold off any infection until next week. She also gave her an anti-estrogen medication to try to keep the tumor at bay while Marye is off chemo. Since Marye's cancer is estrogen-receptor positive (ER+), it feeds off estrogen. Prescribing an aromatase inhibitor slows the body's production of estrogen to keep the tumor from growing too much. We're also concerned with the amount of pain Marye is dealing with, so Dr. Riley gave her MS Contin (long-lasting morphine). Unfortunately, the problem is that Marye is suffering from pretty bad nausea and vomitting for the past two days. We've yet to figure out what's causing it, but we're suspecting the MS Contin, so she moved back to Dilaudid. As of Saturday night, she hasn't left the bedroom since Thursday night, but she is awake and has periods where she feels ok. I'm giving her a lot of Gatorade and trying to get her to eat as much as she can. I'll update again on Sunday or Monday.
-Chris
Since she's been home from the hospital, Marye has been suffering from a good amount of pain from her abdomen. We've been attributing that to her sick gall bladder, but it seemed to be getting worse. She was scheduled to see Dr. Riley on Thursday, and the doctor wanted to get a CT scan to see what was going on in Marye's abdomen. So, we did that. The CT scan showed some abcesses in her abdomen that are probably infection. They also took blood to check on the tumor markers to see what the cancer is doing since Marye hasn't had chemotherapy in five weeks (still waiting on the lab results).
Since Marye is scheduled to see Dr. Vitale on Tuesday about the gall bladder drain tube, Dr. Riley prescribed two fairly generic antibiotics to hold off any infection until next week. She also gave her an anti-estrogen medication to try to keep the tumor at bay while Marye is off chemo. Since Marye's cancer is estrogen-receptor positive (ER+), it feeds off estrogen. Prescribing an aromatase inhibitor slows the body's production of estrogen to keep the tumor from growing too much. We're also concerned with the amount of pain Marye is dealing with, so Dr. Riley gave her MS Contin (long-lasting morphine). Unfortunately, the problem is that Marye is suffering from pretty bad nausea and vomitting for the past two days. We've yet to figure out what's causing it, but we're suspecting the MS Contin, so she moved back to Dilaudid. As of Saturday night, she hasn't left the bedroom since Thursday night, but she is awake and has periods where she feels ok. I'm giving her a lot of Gatorade and trying to get her to eat as much as she can. I'll update again on Sunday or Monday.
-Chris
Saturday, February 11, 2012
Hospice care
Since we got Marye home on Wednesday, she's been kind of up and down. The oral pain medication isn't quite as effective as the IV stuff and she's very, very fatigued. On Thursday, she was so tired and sleeping so hard that she was borderline non-responsive. So, I was talking to her oncologist who suggested we call hospice in. Before you get nervous about that, I found out that there is a big misconception about what hospice is for. People think that hospice is brought in during the final days or weeks of someone's life- and while they do provide that service, it's much more. Hospice is about quality of life care, and they will send a nurse in once a week and a nurse tech in three times a week to evaluate and help Marye (and me) getting cleaned up and comfortable. They manage her medications and (this is the big thing) act as the eyes and ears for the doctor. So when she does have a bad day (like Thursday), the nurse can evaluate her and give the doctor a good assessment.
In the meantime, when Marye gets strong enough to start chemotherapy again, hospice will stop. So, it's a good resource and just another tool to have in the bag. The oncologist said that statistically, people live longer when they have hospice because they are getting better care. So we'll run with this for a while.
Anyway, as I said, Marye is having ups and downs. She perks up for a few hours every day and I'm trying to manage her pain. She's also taking ritalin to give her a boost of energy. She is off the steroids since they actually weaken the immune system and we're still watching her for signs of infection. Overall, she's much more stable and comfortable now.
The hospice nurse will be here on Monday morning and we'll get her started. I'm looking forward to Marye getting some professional care at home to supplement what I'm doing for her. I'll post again on Monday to talk about how it goes. Have a good weekend.
-Chris
In the meantime, when Marye gets strong enough to start chemotherapy again, hospice will stop. So, it's a good resource and just another tool to have in the bag. The oncologist said that statistically, people live longer when they have hospice because they are getting better care. So we'll run with this for a while.
Anyway, as I said, Marye is having ups and downs. She perks up for a few hours every day and I'm trying to manage her pain. She's also taking ritalin to give her a boost of energy. She is off the steroids since they actually weaken the immune system and we're still watching her for signs of infection. Overall, she's much more stable and comfortable now.
The hospice nurse will be here on Monday morning and we'll get her started. I'm looking forward to Marye getting some professional care at home to supplement what I'm doing for her. I'll post again on Monday to talk about how it goes. Have a good weekend.
-Chris
Subscribe to:
Posts (Atom)