It's 10:30 p.m. It may as well be the middle of the night, because normally at this time I am in bed and on my way to dreamville. Tonight, however, I'm supposed to make myself "sleep deprived" in preparation for my EEG which is scheduled for tomorrow morning at 11:00. Why I have to be sleep-deprived for an EEG, I don't know. My plan was to go to bed around 9-ish and sleep til around 12-ish, then get up and stay up until my test, an electroencephalogram. I really don't know what (in the world) made me think I could actually FALL asleep at 9-ish, as my usual routine is to GO to bed at 10-ish and then read, play Words with Friends, and catch up on Facebook until I'm good and sleepy. It appears that the simple fact that I NEEDED to fall asleep has made sleepiness all the more elusive! I thought that this overnight period of sleep deprivation would be a good time to update this blog. It is, but just thinking about what I'm going to blog kept me awake in bed. That, and remodeling plans for every area of our home. Oh and fantasizing about having Chip & Joanna Gaines come by to share with me their amazing "Fixer Upper" style ideas and expertise. What is WRONG with you, Kim?? Too much HGTV-watching, for sure. Seriously, though, should I ever win the lottery, I really do have it all worked out. I'll open up the kitchen, totally re-do both the master and upstairs baths, perhaps add more gameroom upstairs, and add deck & patio to our outdoor space. A girl can dream, can't she?
Ahh, OK, back to reality. Tomorrow is my neurology consult at MD Anderson's main campus downtown. I'll have an EEG and then I'll see the neuro-oncologist. These appointments were added to my schedule after I had a grand mal seizure on July 4th. The last time I saw a neurologist, it was to evaluate severe chemotherapy-induced peripheral neuropathy. I have that going on too, though not yet as severe as when I was last seen.
Last week, I saw my radiation oncologist. I hate that I actually HAVE one of those. Now that I've had time to really process my conversation with her, I've concluded that my brain mets (again, hate) could really be SO much worse. The doc was like "it's a very small spot ... we could just watch and wait and see." Yea, no. But she really has me convinced that it's not that bad. For one, it's just one spot. As opposed to "multiple" lesions, am I right? Two, it's only 4-5 MILLIMETERS in diameter. That's pretty darn small. And three, she does not believe that said lesion is the cause of my seizure. It's too small, there's no swelling of surrounding tissue, and its location on the frontal lobe does not lend itself to causing seizures (a temporal lobe lesion would be more likely to be the culprit.) I have to admit that #3 is a doozy. Alrighty then, what DID cause the seizure?? Perhaps it happened so that the lesion would be discovered and hence treated EARLY, before it had time to grow and multiply and cause other problems?? I know God could do this, but I would have preferred a nice note or kind message of some kind ... not a big scary seizure which carries with it the threat of happening again at any time and in any place. Yea, lots of questions for my God when I meet Him in Heaven. Lots.
I'm also scheduled for Gamma Knife Radiation (should that be capitalized? I'm thinking yes, it's that serious) on August 10th. I'll meet the neurosurgeon on the 8th, because he will be placing the wire "frame" that will be used to guide the Gamma Knife on the day of the procedure. This is the frame that will be attached to my skull in 3 or 4 places. You'd think I would know if it was 3 or 4 ... I guess the mind turns to jelly after you hear that screws will be attached to your skull! Like Frankenstein. But the radiation onc assured me that it's not as bad as it sounds. I'm told there will be sedation, and for that, I can be thankful. I was also thankful to find out that my Gamma Knife treatment will be a one-time thing, not several days of treatment like my previous two experiences with radiation. And, I'll be able to continue on my regular chemotherapy schedule, too. Oh boy! That's me, not missing a beat.
So ... as the dust is settling from the seizure a couple weeks ago, and my appointment schedule has filled even more, as if weekly chemo wasn't enough to do, I have continued on Taxotere. Yes the side effects are greatly improved with the lower, weekly regimen (as compared to the higher, every-three-weeks regimen,) but I am still hating it. Something about it elevates its status to the "worst chemo I've ever been on." That's saying something! Actually there is a cluster of drugs that are all near the top of my worst chemos ... all for totally different reasons ... but overall the Taxotere has SO MANY bad qualities and side effects that I'm calling it the worst of the worst. Have I said how much I hate Taxotere??
Tuesday, July 19, 2016
Saturday, July 9, 2016
Complications and Sadness
If you've been reading here regularly, you know that Taxotere's been pretty rough on me in many ways. What I haven't yet mentioned is that in the midst of my side effect woes, I also found out that my oncologist, Dr. C., was leaving MD Anderson. So upsetting! She has been with me for 4 years now and I must say, we have developed quite a bond (at least from my perspective.) She "gets" me. And she knows how to handle me, too (Danny thought this particular statement was quite funny.) It's the truth! My last visit with her was on June 21st. :( For now I have been assigned to see another oncologist at MD Anderson's Woodlands location -- the same one I saw for a few months when Dr. C. was on maternity leave a couple of years ago. It's unfortunate that I don't have the same confidence in this other doctor that I've had with Dr. C., but we shall see how it goes.
THIS week's news, however, has outweighed and in many ways compounded the news that my favorite doctor was leaving. On the evening of Monday, July 4th, I had a seizure at my home. I remember loading and starting the dishwasher, then sitting down on the sofa and reclining it. Danny was on the telephone in his recliner which is adjacent to the sofa. The next thing I remember is sitting on the toilet and Danny "cleaning me up." I remember crying, and apologizing about the mess. Paramedics were there to take me to the hospital via ambulance. Danny told me about what had happened, but I wouldn't know the full story for a few days. I was confused for a good while and repeated the same questions the rest of the night. Even when I arrived at the hospital, I still didn't know what day it was. It's disturbing to discover that something has happened to you and you don't remember any of it! I do recall in the ambulance knowing that this could probably only mean one thing: brain mets. The cancer has spread to my brain, which caused a seizure. This had yet to be confirmed, of course, but that's what was the most likely explanation.
At the hospital, I received IV fluids and they drew blood for labs. They also did a chest x-ray and a CT scan of the brain. Surprisingly, the CT scan was negative. Normal! What?? I know I was supposed to be happy with this news, but it threw me for a loop because I just assumed it was brain mets causing a major seizure as its first sign.
My magnesium was low at 1.5, so I received a mag infusion while there. My mag's been way lower than that, down sometimes to 1.2. I've had chronically low magnesium levels for many months now as a side effect of the chemotherapy drugs. I've received many magnesium infusions and I also take a supplement by mouth at home twice daily. I suppose the potential is there for a low magnesium or any electrolyte imbalance to cause one to have a seizure. At this point, based on the objective medical evidence, it is the only known potential cause. Of course, some people have seizure disorders with no known etiology. Hm. Very distressing!
Thankfully, when "it" happened, I was in the very cush, safe location of my recliner sofa. And, my husband was nearby, witnessed the whole thing and was available to help immediately. I can only imagine how badly I could have injured myself if I had fallen anywhere else in the house on the tile floor, or if I had been driving somewhere! Danny says that my whole body stiffened up and flexed repeatedly, my head jerked back and my eyes rolled into the back of my head. This lasted for 4-5 minutes. It had to be quite a sight! He said he laid me down on my side and kept calling my name. At some point when it seemed to him that it wasn't stopping, he called 9-1-1.
My son, David, heard the commotion from upstairs and saw the goings-on from the balcony just above the sofa where I was. He was crying hysterically, according to Danny. My poor babies. Heartbreaking that he had to see his Momma like that. Bethany was out with friends for the 4th, and Danny notified her at some point that we were heading to or at the hospital. Her sweet friends accompanied her there, then later back to the house to keep her & David company. My brother- and sister-in-law visited us in the ER. Danny spent a lot of time at the hospital talking and texting family about the evening's events. It is amazing the support I have from so many! He even packed me a bag for the hospital (he says while the ambulance sat in our cul-de-sac for a long while with me and the paramedic in it.) And the bag was REALLY well packed! I wasn't admitted to the hospital, though. I just stayed in the ER for a few hours and then was sent home.
The next day, I messaged my MD Anderson care team and scheduled an appointment. They recommended that I have an MRI, which I did. The MRI showed a small lesion in the frontal lobe which the radiologist described as having no surrounding edema and not resembling a metastatic lesion. But he had to "presume" it was metastasis based on my history. Hmmm, interesting. I really didn't know what to think at this point!!!
My oncologist went with the brain mets presumption and immediately suggested that I change treatment course, calling it "progression." Danny and I weren't so sure. It has been over 2 years since I've had any sort of brain imaging, and at that time I had no lesions in the brain, only on the skull. Our thoughts were as follows: the past year and a half has seen my cancer at its absolute worse. Perhaps it did progress into the brain, at that time, but it's also possible that whatever was in the brain has greatly improved like my lungs, liver, and bones have since then. This little spot (4-5mm, with no accompanying edema) could very well be just a remnant of something much worse ... in which case it would not be cause to give up on Taxotere, but stick with it. Because my latest scans of the chest, abdomen and pelvis, in addition to my tumor markers, are much improved and actually pretty good. My biggest problems right now are the SIDE EFFECTS from the chemo! (well and now that pesky seizure I had last Monday.)
So it's complicated! The oncologist is also recommending gamma knife radiation to the lesion. This is supposed to be a lot more specific to the target area, as opposed to whole-brain radiation. Also supposedly easier on the side effects, which sounds good to me because I'm SO not interested in any further deterioration in my memory or cognitive abilities. I've had radiation before, so I'm not afraid ... change that to I wasn't afraid until I went and Googled the gamma knife. Before one undergoes gamma knife radiation, a neurosurgeon places a wire frame around your head and screws it into your skull. Agggghhhhhhh! Wait a minute, can't I just promise to be a good girl and hold real, real still??! Aye, aye, aye, not sure how much more of this I can take, y'all!
Currently, the plan is to remain on Taxotere for now. I am consulting with a radiation oncologist next week to discuss gamma knife radiation, because the fact is, I do have a lesion, albeit a small one, in my brain that wasn't there 2 years ago. So let's just zap that baby and have it be all gone, right? Right.
Prayers are much appreciated, my peeps!
THIS week's news, however, has outweighed and in many ways compounded the news that my favorite doctor was leaving. On the evening of Monday, July 4th, I had a seizure at my home. I remember loading and starting the dishwasher, then sitting down on the sofa and reclining it. Danny was on the telephone in his recliner which is adjacent to the sofa. The next thing I remember is sitting on the toilet and Danny "cleaning me up." I remember crying, and apologizing about the mess. Paramedics were there to take me to the hospital via ambulance. Danny told me about what had happened, but I wouldn't know the full story for a few days. I was confused for a good while and repeated the same questions the rest of the night. Even when I arrived at the hospital, I still didn't know what day it was. It's disturbing to discover that something has happened to you and you don't remember any of it! I do recall in the ambulance knowing that this could probably only mean one thing: brain mets. The cancer has spread to my brain, which caused a seizure. This had yet to be confirmed, of course, but that's what was the most likely explanation.
At the hospital, I received IV fluids and they drew blood for labs. They also did a chest x-ray and a CT scan of the brain. Surprisingly, the CT scan was negative. Normal! What?? I know I was supposed to be happy with this news, but it threw me for a loop because I just assumed it was brain mets causing a major seizure as its first sign.
My magnesium was low at 1.5, so I received a mag infusion while there. My mag's been way lower than that, down sometimes to 1.2. I've had chronically low magnesium levels for many months now as a side effect of the chemotherapy drugs. I've received many magnesium infusions and I also take a supplement by mouth at home twice daily. I suppose the potential is there for a low magnesium or any electrolyte imbalance to cause one to have a seizure. At this point, based on the objective medical evidence, it is the only known potential cause. Of course, some people have seizure disorders with no known etiology. Hm. Very distressing!
Thankfully, when "it" happened, I was in the very cush, safe location of my recliner sofa. And, my husband was nearby, witnessed the whole thing and was available to help immediately. I can only imagine how badly I could have injured myself if I had fallen anywhere else in the house on the tile floor, or if I had been driving somewhere! Danny says that my whole body stiffened up and flexed repeatedly, my head jerked back and my eyes rolled into the back of my head. This lasted for 4-5 minutes. It had to be quite a sight! He said he laid me down on my side and kept calling my name. At some point when it seemed to him that it wasn't stopping, he called 9-1-1.
My son, David, heard the commotion from upstairs and saw the goings-on from the balcony just above the sofa where I was. He was crying hysterically, according to Danny. My poor babies. Heartbreaking that he had to see his Momma like that. Bethany was out with friends for the 4th, and Danny notified her at some point that we were heading to or at the hospital. Her sweet friends accompanied her there, then later back to the house to keep her & David company. My brother- and sister-in-law visited us in the ER. Danny spent a lot of time at the hospital talking and texting family about the evening's events. It is amazing the support I have from so many! He even packed me a bag for the hospital (he says while the ambulance sat in our cul-de-sac for a long while with me and the paramedic in it.) And the bag was REALLY well packed! I wasn't admitted to the hospital, though. I just stayed in the ER for a few hours and then was sent home.
The next day, I messaged my MD Anderson care team and scheduled an appointment. They recommended that I have an MRI, which I did. The MRI showed a small lesion in the frontal lobe which the radiologist described as having no surrounding edema and not resembling a metastatic lesion. But he had to "presume" it was metastasis based on my history. Hmmm, interesting. I really didn't know what to think at this point!!!
My oncologist went with the brain mets presumption and immediately suggested that I change treatment course, calling it "progression." Danny and I weren't so sure. It has been over 2 years since I've had any sort of brain imaging, and at that time I had no lesions in the brain, only on the skull. Our thoughts were as follows: the past year and a half has seen my cancer at its absolute worse. Perhaps it did progress into the brain, at that time, but it's also possible that whatever was in the brain has greatly improved like my lungs, liver, and bones have since then. This little spot (4-5mm, with no accompanying edema) could very well be just a remnant of something much worse ... in which case it would not be cause to give up on Taxotere, but stick with it. Because my latest scans of the chest, abdomen and pelvis, in addition to my tumor markers, are much improved and actually pretty good. My biggest problems right now are the SIDE EFFECTS from the chemo! (well and now that pesky seizure I had last Monday.)
So it's complicated! The oncologist is also recommending gamma knife radiation to the lesion. This is supposed to be a lot more specific to the target area, as opposed to whole-brain radiation. Also supposedly easier on the side effects, which sounds good to me because I'm SO not interested in any further deterioration in my memory or cognitive abilities. I've had radiation before, so I'm not afraid ... change that to I wasn't afraid until I went and Googled the gamma knife. Before one undergoes gamma knife radiation, a neurosurgeon places a wire frame around your head and screws it into your skull. Agggghhhhhhh! Wait a minute, can't I just promise to be a good girl and hold real, real still??! Aye, aye, aye, not sure how much more of this I can take, y'all!
Currently, the plan is to remain on Taxotere for now. I am consulting with a radiation oncologist next week to discuss gamma knife radiation, because the fact is, I do have a lesion, albeit a small one, in my brain that wasn't there 2 years ago. So let's just zap that baby and have it be all gone, right? Right.
Prayers are much appreciated, my peeps!
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