I hope I am wrong. But I have a really bad feeling about today. Yesterday she was very unstable, the only time she walked on her own was yesterday morning as we entered the hospital to check in, and she got very unstable and had to sit down and from then on, for the rest of the day she was in a wheelchair. When we got home in the afternoon, she was able to walk from the car up to the living room with my assistance, but then her legs started spasming and gave out and I had to carry her to her chair in the family room. She spent the entire afternoon and evening there, napping, reading, eating and chatting (not needing to use the bathroom). When it was time for bed, she tried walking to the bathroom, but the same thing happened. I finally got her in bed, and she is sleeping soundly. But throughout the night, her legs have continued to spasm, although not as frequently as when she had weight on them.
So I am poised to call the on-call oncologist this morning (Kaplan is out of town). We will test her legs when she gets out of bed (with my assistance). If she has any difficulty, I'm calling. I don't know if it means a run to emergency, or just check in to the hospital. Or wait until Monday. What should happen is a scan of her spine. I suspect tumor involvement impacting her leg function. It would be consistent with the pain she is experiencing (which is now masked by the medication). It would also be consistent with her prior spinal tumors. Hard to believe it is medication related. Whether it is locally recurrent and can't be treated again (her spine from T-11 to L-4 had tomotherapy radiation) or in another section of the spine which can be treated is the question. There are only two treatments - chemotherapy and radiation. In any event, since the chemotherapy is already happening, radiation wouldn't start for a while and takes even longer to have an effect. So if it is cancer which is causing the instability and loss of leg function, it means she will be in a wheelchair for a while, if not forever. A dramatic and ugly turn of events. Emotionally and physically.
Thus my dread.
Showing posts with label cancer treatment side effects. Show all posts
Showing posts with label cancer treatment side effects. Show all posts
Saturday, October 29, 2011
Wednesday, October 26, 2011
Gearing up
No medical appointments today. Tomorrow we see Dr Kaplan.
First she has a blood draw to make sure she is ok to continue the chemotherapy. So far she is doing alright, after her first treatment last Thursday. She feels relatively clear and not very sick. It's really hard to correlate the symptoms she is experiencing to particular treatments or cancer driven things. For example she is very unsteady. Is that related to the chemo, the meds, cancer showing up in the spinal fluid and affecting nerves controlling balance and gait, or a new brain tumor? She also has pain in her lower back - reasonably well managed with the pain meds she is on for her arm, but she still needs ice and ibuprofen to keep it down. That pain is likely not driven by the chemo, but by the cancer. So we need a scan of that area, but it is not the highest priority right now.
The countdown is on for the hair loss - it's been seven days and it usually occurs between days 14-21. She bought some fake eyelashes on-line yesterday and got her wig ready...
We will also talk with Kaplan about the spinal tap as a diagnostic procedure for cancer in the spinal fluid. My guess is he will want to wait to decide until the results of the brain MRI (Friday). My hunch is that even if he suspects cancer is in the spinal fluid (which is pretty likely from the research I have done) he will not want to recommend the spinal tap as the treatment (chemo) is what he has her on anyway. He may recommend radiation but that kind of treatment may not be too effective for cells in the fluid - it's better for solid mass tumors. The usual treatment for spinal fluid cancer is chemo poured directly into the fluid through a port surgically implanted in your head - which doesn't sound at all attractive. If she has brain tumors, treatment for those take priority.
In late stage cancer this is what typically happens - the tumor burden starts increasing and it can overwhelm the body's ability to handle it or the body's ability to deal with all the treatments, which must be staged and sequenced. Pain management becomes a bigger issue.
First she has a blood draw to make sure she is ok to continue the chemotherapy. So far she is doing alright, after her first treatment last Thursday. She feels relatively clear and not very sick. It's really hard to correlate the symptoms she is experiencing to particular treatments or cancer driven things. For example she is very unsteady. Is that related to the chemo, the meds, cancer showing up in the spinal fluid and affecting nerves controlling balance and gait, or a new brain tumor? She also has pain in her lower back - reasonably well managed with the pain meds she is on for her arm, but she still needs ice and ibuprofen to keep it down. That pain is likely not driven by the chemo, but by the cancer. So we need a scan of that area, but it is not the highest priority right now.
The countdown is on for the hair loss - it's been seven days and it usually occurs between days 14-21. She bought some fake eyelashes on-line yesterday and got her wig ready...
We will also talk with Kaplan about the spinal tap as a diagnostic procedure for cancer in the spinal fluid. My guess is he will want to wait to decide until the results of the brain MRI (Friday). My hunch is that even if he suspects cancer is in the spinal fluid (which is pretty likely from the research I have done) he will not want to recommend the spinal tap as the treatment (chemo) is what he has her on anyway. He may recommend radiation but that kind of treatment may not be too effective for cells in the fluid - it's better for solid mass tumors. The usual treatment for spinal fluid cancer is chemo poured directly into the fluid through a port surgically implanted in your head - which doesn't sound at all attractive. If she has brain tumors, treatment for those take priority.
In late stage cancer this is what typically happens - the tumor burden starts increasing and it can overwhelm the body's ability to handle it or the body's ability to deal with all the treatments, which must be staged and sequenced. Pain management becomes a bigger issue.
Wednesday, September 28, 2011
A rugged couple days...
emotionally that is. Makes the actual physical stuff seem like a walk in the park.
Met with our surgeon this morning (Dr Hanson) and we are green light to get the arm tumor out on Monday afternoon. Then spent an hour at the eye doc trying to figure out how to correct her eyeglass and reading prescription again to deal with her blind spot and double vision when she reads. Tomorrow morning bright and early is the Gamma knife brain tumor treatment.
Meagan is a bit better emotionally today, thanks to the passage of time and some phone call help from a great friend with advice on how to cope with her loss of mental capability. She was just really overcome by the realization that she is not as sharp as she used to be and has all these issues with confusion, memory, and speaking (leaving out completely her deficit with regards to numbers and dates which she acknowledges and doesn't care about). Even in the car on the way home this afternoon she said something, and I repeated it, altering it to make it correct, and she said, "isn't that what I said?", to which I replied, "no", and then she said, "but that is what I thought I said". So, many many times she is thinking the right thing, but the words come out incorrectly, and she doesn't even know it. Fortunately she didn't get upset this time, it was more realization and curiosity. But over the last 36 hours there have been buckets of tears and she even said this morning how heartbreaking it was for her to realize she is not what she once was mentally. She forgets how often things get repeated or how much she is asked to repeat what she said, and even said to me at one point, "why didn't anyone tell me?". Well, we did, but she doesn't remember. So it feels all new - this realization of mental capacity change - making it more terrible than usual.
Of course I am working triple overtime trying to convince her that it doesn't matter, that people are looking at the core of who she is and the strengths she brings irrespective of mental capacity and that it's not important that she gets all the facts right and that it's ok if she needs slight tweaks in what she says. But it is still difficult - difficult for her to realize that sometimes she talks nonsense to her loved ones, difficult for her to think she might be being treated like the retarded cousin in the corner (her politically incorrect comparison, not mine!), and difficult for her to think that people can't trust or rely on what she says as being truthful. Her self image and self perception of being a sharp thinker is challenged and it is not pretty, especially when it is the case. Even yesterday she broke down in front of Kaplan after she said, "you know, I used to be a pretty sharp person". He was very kind and supportive, but didn't deny nor can anyone really deny what is taking place. She keeps asking if it's the meds or the stroke or the brain treatments and all the docs just shrug their shoulders - who knows? So it could very likely be a permanent state - although I've heard the new chemo she will start in a week or so doesn't have as much chemo brain impact. But then again, she gets her brain zapped tomorrow, so who knows what impact that will have - a fact she is acutely aware of.
Maybe some people could just accept their condition and be graceful and calm about it. But this is not the case with Meagan. It is tragic and hurtful and sad and generates a lot of emotional distress. To everyone around her regularly too (i.e., me and the boys).
Met with our surgeon this morning (Dr Hanson) and we are green light to get the arm tumor out on Monday afternoon. Then spent an hour at the eye doc trying to figure out how to correct her eyeglass and reading prescription again to deal with her blind spot and double vision when she reads. Tomorrow morning bright and early is the Gamma knife brain tumor treatment.
Meagan is a bit better emotionally today, thanks to the passage of time and some phone call help from a great friend with advice on how to cope with her loss of mental capability. She was just really overcome by the realization that she is not as sharp as she used to be and has all these issues with confusion, memory, and speaking (leaving out completely her deficit with regards to numbers and dates which she acknowledges and doesn't care about). Even in the car on the way home this afternoon she said something, and I repeated it, altering it to make it correct, and she said, "isn't that what I said?", to which I replied, "no", and then she said, "but that is what I thought I said". So, many many times she is thinking the right thing, but the words come out incorrectly, and she doesn't even know it. Fortunately she didn't get upset this time, it was more realization and curiosity. But over the last 36 hours there have been buckets of tears and she even said this morning how heartbreaking it was for her to realize she is not what she once was mentally. She forgets how often things get repeated or how much she is asked to repeat what she said, and even said to me at one point, "why didn't anyone tell me?". Well, we did, but she doesn't remember. So it feels all new - this realization of mental capacity change - making it more terrible than usual.
Of course I am working triple overtime trying to convince her that it doesn't matter, that people are looking at the core of who she is and the strengths she brings irrespective of mental capacity and that it's not important that she gets all the facts right and that it's ok if she needs slight tweaks in what she says. But it is still difficult - difficult for her to realize that sometimes she talks nonsense to her loved ones, difficult for her to think she might be being treated like the retarded cousin in the corner (her politically incorrect comparison, not mine!), and difficult for her to think that people can't trust or rely on what she says as being truthful. Her self image and self perception of being a sharp thinker is challenged and it is not pretty, especially when it is the case. Even yesterday she broke down in front of Kaplan after she said, "you know, I used to be a pretty sharp person". He was very kind and supportive, but didn't deny nor can anyone really deny what is taking place. She keeps asking if it's the meds or the stroke or the brain treatments and all the docs just shrug their shoulders - who knows? So it could very likely be a permanent state - although I've heard the new chemo she will start in a week or so doesn't have as much chemo brain impact. But then again, she gets her brain zapped tomorrow, so who knows what impact that will have - a fact she is acutely aware of.
Maybe some people could just accept their condition and be graceful and calm about it. But this is not the case with Meagan. It is tragic and hurtful and sad and generates a lot of emotional distress. To everyone around her regularly too (i.e., me and the boys).
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