Tuesday, July 01, 2008
Brain Update
I'm not bent on world conquest to the degree that the Brain is, but I have the same pale noggin and bags under my eyes. I think that's as far as the comparison can really go (unless somebody wants to make a crack about my shortness of stature). Brain may have been experimented on and possibly gets lots of shots, but I'm pretty sure they don't have to give him little tiny mouse MRIs. I got good news about my recent brain MRI: The scan shows no new lesions, and the existing ones are reduced in size. Brain mets do not automatically go away; once they're killed, they either can sit there, inert, for quite a while, or sometimes they get reabsorbed by the body and disposed of.
At my appointment today it was decided to delay my next paracentesis until Monday so as to not do it too early--Brian and I are leaving for New York to visit his brother Scott and the various nieces and nephews for the Fourth of July. I also found out my liver function numbers are improved, and that I would be getting infused today. I had to walk over to "Med Inn" which is actually a hotel in the hospital for out of town patients and family which has treatment areas that are semi-private and they had a strolling massage-giver offering foot or back or neck rubs or whatever. They don't do that at regular infusion! And regular infusion is always out of bagels.
Since the swelling in my brain is down and my cognitive function seems pretty much normal, I can set aside my fears I was going to end up incoherent and illogical as Brain's cohort, Pinky. I hope no more pesky lesions crop up. "Pinky, are you pondering what I'm pondering?"
"I think so, Brain, but where are we going to find men's underpants that fit?"
Labels: brain metastases, brain scan, Brian, Gemzar, liver, MRI, paracentesis, vacation, Zometa
Tuesday, June 17, 2008
Xeloda a Bust: now we try Gemzar
My appointments today ran rather longer than expected. The nutritionist gave me lots of sample protein supplement drinks and mixes, gave me a folder filled with nutrition information, suggested small, multiple meals per day (I think I'm going to have to make myself a schedule) and told me exactly how many calories and how much protein I should be getting to not lose any more weight.
It's a lot more than I expected.
She also gave me advice about dealing with the horrible taste in my mouth. Lemon things seem to be pretty good.
Of course, with the change in chemos, I might not have the same appetite problems, although I do see "loss of appetite" on the list of Gemzar side-effects. I shall try not to psych myself into having the side-effects that are listed. Brian is at the grocery store and asked me about whether I'd want ingredients to make one of the smoothies. I do not want smoothies...I wish I did; it would be fairly easy to put them together. Oh well.
I got very nervous when Dr. Hayes mentioned that 5% of people taking Gemzar develop pneumonia. How lucky am I feeling now?
Also, tomorrow I am to have an ultrasound, and if there is a pocket of liquid in my belly, they'll stick a big ol' giant needle into me, push in a plastic "straw" and let the fluid drain out like I'm a maple tree. Later this month I'm having a brain MRI to get a new "baseline" and check up on how my noggin is doing.
Busy month!
It's a lot more than I expected.
She also gave me advice about dealing with the horrible taste in my mouth. Lemon things seem to be pretty good.
Of course, with the change in chemos, I might not have the same appetite problems, although I do see "loss of appetite" on the list of Gemzar side-effects. I shall try not to psych myself into having the side-effects that are listed. Brian is at the grocery store and asked me about whether I'd want ingredients to make one of the smoothies. I do not want smoothies...I wish I did; it would be fairly easy to put them together. Oh well.
I got very nervous when Dr. Hayes mentioned that 5% of people taking Gemzar develop pneumonia. How lucky am I feeling now?
Also, tomorrow I am to have an ultrasound, and if there is a pocket of liquid in my belly, they'll stick a big ol' giant needle into me, push in a plastic "straw" and let the fluid drain out like I'm a maple tree. Later this month I'm having a brain MRI to get a new "baseline" and check up on how my noggin is doing.
Busy month!
Labels: brain scan, Brian, Dr. Hayes, Gemzar, MRI, nutritionist, ultrasound, Xeloda
Wednesday, February 06, 2008
You Are Not Morg or I-Morg
Sunday I was afflicted with aphasia.
I had posted to a bulletin board and was flipping back and forth with Brian between Alias, Puppy Bowl IV, and the Superbowl. I was also trying to begin knitting a hat, and started having trouble counting my cast-on stitches.
I suddenly felt very stupid. In addition to actually having problems counting, I couldn't remember how to finish casting on. Then I couldn't figure out how to start knitting the round.
Then I got tired of watching Alias, so I tried to tell Brian that he could watch the Superbowl, since we had already seen most of a showing of Puppy Bowl.
The words wouldn't come out.
I got frustrated, Brian got frustrated with me, so I went upstairs to take a bath. When Brian tried to ask me what was wrong, I really couldn't explain or do anything much more than cry. I could pretty much only say "yes," "no," and "oh Lord." So he dialed the on-call oncologist's number, and we were told to go to the emergency room at U of M, where they tried to ask me dizzying questions I couldn't answer, and gave me various scans, which indicated positive for brain metastases.
I was admitted and have so far been through three whole-brain radiation treatments. I will undergo fourteen altogether.
What really helped me recover speech and thinking (I couldn't remember properly the days of the week or months of the year--I couldn't remember our dog's name; I couldn't spell "Elkins" or "Yanosko") was a tiny steroid pill. I have been evaluated by a speech therapist, who believes I am doing just fine. The brain radiation might cause some temporary loss of memory or cognition, but it may be possible to increase the steroid. I have also heard a lot of positive stories about people being successfully treated for brain mets so I am very hopeful.
It was terribly frightening, but we will deal with this.
For now I feel like I've had the brain helmet put on and could operate on Spock if I needed to.
I had posted to a bulletin board and was flipping back and forth with Brian between Alias, Puppy Bowl IV, and the Superbowl. I was also trying to begin knitting a hat, and started having trouble counting my cast-on stitches.
I suddenly felt very stupid. In addition to actually having problems counting, I couldn't remember how to finish casting on. Then I couldn't figure out how to start knitting the round.
Then I got tired of watching Alias, so I tried to tell Brian that he could watch the Superbowl, since we had already seen most of a showing of Puppy Bowl.
The words wouldn't come out.
I got frustrated, Brian got frustrated with me, so I went upstairs to take a bath. When Brian tried to ask me what was wrong, I really couldn't explain or do anything much more than cry. I could pretty much only say "yes," "no," and "oh Lord." So he dialed the on-call oncologist's number, and we were told to go to the emergency room at U of M, where they tried to ask me dizzying questions I couldn't answer, and gave me various scans, which indicated positive for brain metastases.
I was admitted and have so far been through three whole-brain radiation treatments. I will undergo fourteen altogether.
What really helped me recover speech and thinking (I couldn't remember properly the days of the week or months of the year--I couldn't remember our dog's name; I couldn't spell "Elkins" or "Yanosko") was a tiny steroid pill. I have been evaluated by a speech therapist, who believes I am doing just fine. The brain radiation might cause some temporary loss of memory or cognition, but it may be possible to increase the steroid. I have also heard a lot of positive stories about people being successfully treated for brain mets so I am very hopeful.
It was terribly frightening, but we will deal with this.
For now I feel like I've had the brain helmet put on and could operate on Spock if I needed to.
Labels: aphasia, brain metastases, brain scan, Brian, CT scan, Decadron, MRI, star trek, WBR, whole-brain radiation
Sunday, June 17, 2007
Don't Even TRY to Tell Me
Warning: this is a long, rambling rant. It does not contain sufficient citations/annotations and is somewhat repetitive.
"People who get DCIS are lucky."
Read my archive and then tell me how "lucky" people who get DCIS are. I heard this from my doctors, and I've read it on cancer survivor bulletin boards. People assume DCIS involves less treatment than other types of breast cancer so it must be "easier." I know of people who had their cancer staged higher than mine who had less initial treatment, and probably will not recur--some of whom express envy of people who were staged with DCIS.
One of my bulletin board compatriots, a woman who has metastatic disease, also had DCIS and now has confirmed brain mets.
The tiniest cancer cell is as deadly as any other mass of cancer cells.
"CMF chemo is 'light' and therefore easy."
I felt like I had the flu for six months and gained permanent aversions to certain smells. I can never smell baby shampoo without gagging because my oncology nurse suggested that baby shampoo would help keep my hair from falling out.
Just because I only developed a bald spot and didn't lose all my hair did NOT mean I felt swell and dandy. Having the flu sucks. Having flu symptoms as part of an effort to make you "better" doesn't make the symptoms more fun.
"If you don't have a 'family history' of breast cancer, your risk is lower."
Most people who are diagnosed with breast cancer have no family history. Having a family history can raise an individual's risk--and may be an indicator that there is a genetic component--but that's a completely different kind of statistic and doesn't apply to the population as a whole. Yes, screening of people with a family history is extremely important, but so is screening the majority of the population who will be diagnosed. I've been told many times it's better to catch it "early" (see my remarks about DCIS above), so why are doctors not more interested in catching it early?
"It's not worth screening younger women because of all the 'false positives.' "
I was diagnosed at age 30 and had no "history" of breast cancer that I knew of. My mother, my grandmother never had it; I have no sisters. If I had waited until the appropriate age to have a screening mammogram--and if my family care practice hadn't been on the ball enough to suggest a mammogram to investigate my lump (which, freakishly, turned out to be harmless, although there was cancer there), I'd still be waiting for my screening mammogram.
When I was first diagnosed, I was advised to get a copy of Dr. Susan Love's Breast Book. It is very large and makes an excellent doorstop. She explains the anatomy of the breast as well as anyone can, but this book did not help me because I had doctors who were able to explain things as least as clearly and in fewer words. While I was going through treatment, I encountered an article she wrote (or was interviewed for...I'm too angry and lazy to go look up the citation) in Glamour Magazine wherein she commented that we make too big a deal out of cancer and that many young women are unnecessarily frightened and undergo unnecessary surgery due to a rash breast cancer diagnosis.
Her entire thesis is that those people who might experience a "false positive" are statistically more important than I am.
Well f*ck that.
Recently guidelines for breast MRIs were published that I had hoped would make it easier for younger women to be screened for breast cancer (the difficulty being that young breast tissue tends to be dense and mammograms don't work very well on dense breasts), but the guidelines still state that MRIs are really only appropriate for people with "an increased risk" of breast cancer.
Do you know who is NOT at "increased risk"? PEOPLE WHO HAVE ALREADY HAD BREAST CANCER.
?!
People who are under the age of 35 who have "no family history" but who have an unexplained lump are not at "increased risk." This whole MRI thing would have had me still waiting for my baseline screening.
I don't read Dr. Susan Love's remarks anymore, and I get very angry when I read things of the same flavor...Anyone who suggests to me that statistics are a valid reason to let me go untreated/undiagnosed is not somebody I care to listen to.
"In follow up care, we shouldn't be too quick to run scans and tests."
This is largely to keep costs down, I believe. Scans and scanning equipment are expensive. "False positives" are expensive. Insurance is expensive. It is not good to cause needless emotional trauma to fragile, fragile women.
You know what else is expensive and traumatizing? Spending a damn month in the hospital with a mangled pelvis because it wasn't worth running expensive scans on a "lucky" woman who had DCIS, did "light chemo" was "cured" and has no "family history." I would be very interested to know if anyone has ever calculated the relative cost of treating someone who was not screened early enough to catch a disease before it got really ugly versus the cost of doing a scan that finds what it is looking for so the patient can be treated appropriately. I know my treatments have not been cheap. How much money could have been saved by doing a bone scan months before I had all kinds of other procedures which were unable to verify why I was having hip pain?
"Stage IV people should be treated if they are symptomatic, not before. We shouldn't go looking for disease in remote parts of the body."
I've heard that by the time bone mets are painful, they are very advanced. What's wrong with preventative medicine? Doesn't anybody study whether preventative medicine is cheaper in the long run than treating advanced crises? Wouldn't therapies that prevent bone mets reduce costs for everyone later along the line?
I also have recently read some articles debating the merits of doing routine brain scans on people with stage IV cancer. The current thinking (and I believe my doctor feels this way, too) is that in treating advanced disease, one treats the symptoms and doesn't go looking for trouble. In other words, my doctor probably will not check me for brain mets unless I start having severe neurological symptoms. I did have a brain scan when I was going through my stint of uncontrollable vomiting, but haven't had one since.
I will not have targeted therapy of my liver--and instead will continue systemic treatment--because I feel "fine."
The woman I referred to in the beginning of this post, who was also feeling "fine" until just a day or so ago has just discovered that she has some massive lesions in her brain. She discovered this by undergoing a terrifying seizure, during which she was conscious and could hear her own labored breathing--which she describes as sounding like that of her dying grandmother.
I wonder if I am becoming too complacent with my own treatment.
Maybe it's time to demand some scans. I have to do my part to drive up medical costs for everyone else to save my own, needless ass.
"People who get DCIS are lucky."
Read my archive and then tell me how "lucky" people who get DCIS are. I heard this from my doctors, and I've read it on cancer survivor bulletin boards. People assume DCIS involves less treatment than other types of breast cancer so it must be "easier." I know of people who had their cancer staged higher than mine who had less initial treatment, and probably will not recur--some of whom express envy of people who were staged with DCIS.
One of my bulletin board compatriots, a woman who has metastatic disease, also had DCIS and now has confirmed brain mets.
The tiniest cancer cell is as deadly as any other mass of cancer cells.
"CMF chemo is 'light' and therefore easy."
I felt like I had the flu for six months and gained permanent aversions to certain smells. I can never smell baby shampoo without gagging because my oncology nurse suggested that baby shampoo would help keep my hair from falling out.
Just because I only developed a bald spot and didn't lose all my hair did NOT mean I felt swell and dandy. Having the flu sucks. Having flu symptoms as part of an effort to make you "better" doesn't make the symptoms more fun.
"If you don't have a 'family history' of breast cancer, your risk is lower."
Most people who are diagnosed with breast cancer have no family history. Having a family history can raise an individual's risk--and may be an indicator that there is a genetic component--but that's a completely different kind of statistic and doesn't apply to the population as a whole. Yes, screening of people with a family history is extremely important, but so is screening the majority of the population who will be diagnosed. I've been told many times it's better to catch it "early" (see my remarks about DCIS above), so why are doctors not more interested in catching it early?
"It's not worth screening younger women because of all the 'false positives.' "
I was diagnosed at age 30 and had no "history" of breast cancer that I knew of. My mother, my grandmother never had it; I have no sisters. If I had waited until the appropriate age to have a screening mammogram--and if my family care practice hadn't been on the ball enough to suggest a mammogram to investigate my lump (which, freakishly, turned out to be harmless, although there was cancer there), I'd still be waiting for my screening mammogram.
When I was first diagnosed, I was advised to get a copy of Dr. Susan Love's Breast Book. It is very large and makes an excellent doorstop. She explains the anatomy of the breast as well as anyone can, but this book did not help me because I had doctors who were able to explain things as least as clearly and in fewer words. While I was going through treatment, I encountered an article she wrote (or was interviewed for...I'm too angry and lazy to go look up the citation) in Glamour Magazine wherein she commented that we make too big a deal out of cancer and that many young women are unnecessarily frightened and undergo unnecessary surgery due to a rash breast cancer diagnosis.
Her entire thesis is that those people who might experience a "false positive" are statistically more important than I am.
Well f*ck that.
Recently guidelines for breast MRIs were published that I had hoped would make it easier for younger women to be screened for breast cancer (the difficulty being that young breast tissue tends to be dense and mammograms don't work very well on dense breasts), but the guidelines still state that MRIs are really only appropriate for people with "an increased risk" of breast cancer.
Do you know who is NOT at "increased risk"? PEOPLE WHO HAVE ALREADY HAD BREAST CANCER.
?!
People who are under the age of 35 who have "no family history" but who have an unexplained lump are not at "increased risk." This whole MRI thing would have had me still waiting for my baseline screening.
I don't read Dr. Susan Love's remarks anymore, and I get very angry when I read things of the same flavor...Anyone who suggests to me that statistics are a valid reason to let me go untreated/undiagnosed is not somebody I care to listen to.
"In follow up care, we shouldn't be too quick to run scans and tests."
This is largely to keep costs down, I believe. Scans and scanning equipment are expensive. "False positives" are expensive. Insurance is expensive. It is not good to cause needless emotional trauma to fragile, fragile women.
You know what else is expensive and traumatizing? Spending a damn month in the hospital with a mangled pelvis because it wasn't worth running expensive scans on a "lucky" woman who had DCIS, did "light chemo" was "cured" and has no "family history." I would be very interested to know if anyone has ever calculated the relative cost of treating someone who was not screened early enough to catch a disease before it got really ugly versus the cost of doing a scan that finds what it is looking for so the patient can be treated appropriately. I know my treatments have not been cheap. How much money could have been saved by doing a bone scan months before I had all kinds of other procedures which were unable to verify why I was having hip pain?
"Stage IV people should be treated if they are symptomatic, not before. We shouldn't go looking for disease in remote parts of the body."
I've heard that by the time bone mets are painful, they are very advanced. What's wrong with preventative medicine? Doesn't anybody study whether preventative medicine is cheaper in the long run than treating advanced crises? Wouldn't therapies that prevent bone mets reduce costs for everyone later along the line?
I also have recently read some articles debating the merits of doing routine brain scans on people with stage IV cancer. The current thinking (and I believe my doctor feels this way, too) is that in treating advanced disease, one treats the symptoms and doesn't go looking for trouble. In other words, my doctor probably will not check me for brain mets unless I start having severe neurological symptoms. I did have a brain scan when I was going through my stint of uncontrollable vomiting, but haven't had one since.
I will not have targeted therapy of my liver--and instead will continue systemic treatment--because I feel "fine."
The woman I referred to in the beginning of this post, who was also feeling "fine" until just a day or so ago has just discovered that she has some massive lesions in her brain. She discovered this by undergoing a terrifying seizure, during which she was conscious and could hear her own labored breathing--which she describes as sounding like that of her dying grandmother.
I wonder if I am becoming too complacent with my own treatment.
Maybe it's time to demand some scans. I have to do my part to drive up medical costs for everyone else to save my own, needless ass.
Labels: bone scan, brain scan, DCIS, metastasis, MRI, prevention
Wednesday, April 05, 2006
AAAAAAaaaaaa!!! Or: try not to pay attention to offhand things said by random people on tv.
Last tuesday the weight of everything that has been happening came crashing down in a crushing implosion of fear, doubt, panic, paranoia, and just plain terror. I recall watching a show wherein one of the people being interviewed made a random comment about her mom having lost her battle with breast cancer at age 45. Ordinarily I would not have associated myself with such a comment. I would have paused for a moment, thought to myself, "How sad. That must be difficult to deal with," and then moved on. This time I couldn't forget that maybe someday soon somebody will say that about me. Maybe they will speak of my "courage in the face of adversity," or some equally sentimental blather. Maybe they will be sad and choked up. I don't know.
What I do know is that my doctor had sent me to get a brain scan to see if I had any brain metastases, and I read earlier in the week a blog by somebody who had been suffering from brain mets and who was not doing well. "I'll bet you a hundred dollars now you don't have them," my doctor said, holding out his hand in a friendly wager.
I'm sorry, doctor, but I just don't believe such things anymore:
If somebody tells me not to worry, I don't think it's going to happen. So Tuesday evening I was all stressed and began crying uncontrollably. This is something I hate doing because a) it tends to be contagious, and I hate it when Brian gets upset and b) It's just plain embarrassing to be out of control like that. I also threw up again for the first time in at least a week; I thought I had gotten over that. So with the sobbing and the worrying about the future, it suddenly occurred to me that I hadn't heard any results of the test.
"Surely they'd have called immediately if there had been anything bad," Brian said. True, but my paranoia was not about to be derailed by logic. So I sobbed some more. I asked for kleenex and tried to keep the tears from dripping into my ears. My pillow got exceedlingly soggy, and then I couldn't sleep. I kept sitting bolt upright and getting up to do something, anything. To go to the bathroom. To brush my hair. To look for something or organize a drawer. To brush my teeth. Again. By the early hours of the morning I was an utter basket case. I couldn't stand to be touched and Brian wanted to stay home for the day. I went to get my palm pilot and cell phone so I could call Lita first thing for the results.
Brian did go off to work, and I called Lita's office and left a very shaky, paniced message. A couple of hours later, one of the other nurses called me back to say that Lita was in clinic all morning and had asked her to go through her messages. Anyway, the tests had come back and they showed everything was normal.
I thanked her in a very broken voice, hung up the phone, and sobbed hysterically. Normal! Thank god...Thank you for not being so cruel as to have me beat the odds this time. After more weeping and worrying about the future, I suddenly realized that I have a prescription for xanax which says, "take one three times daily as needed for anxiety." Brother, do I have anxiety.
So I've added some xanax to my regimen, although I break them in half now because they make me very sleepy. I might have to stop them until the next crying jag, which I hope will not be for a long time, and which will not be precipitated by something quite so scary as brain mets.
What I do know is that my doctor had sent me to get a brain scan to see if I had any brain metastases, and I read earlier in the week a blog by somebody who had been suffering from brain mets and who was not doing well. "I'll bet you a hundred dollars now you don't have them," my doctor said, holding out his hand in a friendly wager.
I'm sorry, doctor, but I just don't believe such things anymore:
- "Oh, it's probably nothing."
- "You're so young; you have nothing to worry about."
- "Nine times out of ten these things are harmless, especially in people with your history."
- "After surgery and chemo, you're clear. You don't have anything to worry about."
If somebody tells me not to worry, I don't think it's going to happen. So Tuesday evening I was all stressed and began crying uncontrollably. This is something I hate doing because a) it tends to be contagious, and I hate it when Brian gets upset and b) It's just plain embarrassing to be out of control like that. I also threw up again for the first time in at least a week; I thought I had gotten over that. So with the sobbing and the worrying about the future, it suddenly occurred to me that I hadn't heard any results of the test.
"Surely they'd have called immediately if there had been anything bad," Brian said. True, but my paranoia was not about to be derailed by logic. So I sobbed some more. I asked for kleenex and tried to keep the tears from dripping into my ears. My pillow got exceedlingly soggy, and then I couldn't sleep. I kept sitting bolt upright and getting up to do something, anything. To go to the bathroom. To brush my hair. To look for something or organize a drawer. To brush my teeth. Again. By the early hours of the morning I was an utter basket case. I couldn't stand to be touched and Brian wanted to stay home for the day. I went to get my palm pilot and cell phone so I could call Lita first thing for the results.
Brian did go off to work, and I called Lita's office and left a very shaky, paniced message. A couple of hours later, one of the other nurses called me back to say that Lita was in clinic all morning and had asked her to go through her messages. Anyway, the tests had come back and they showed everything was normal.
I thanked her in a very broken voice, hung up the phone, and sobbed hysterically. Normal! Thank god...Thank you for not being so cruel as to have me beat the odds this time. After more weeping and worrying about the future, I suddenly realized that I have a prescription for xanax which says, "take one three times daily as needed for anxiety." Brother, do I have anxiety.
So I've added some xanax to my regimen, although I break them in half now because they make me very sleepy. I might have to stop them until the next crying jag, which I hope will not be for a long time, and which will not be precipitated by something quite so scary as brain mets.
Labels: anxiety, brain scan, Brian, Lita, Xanax
Wednesday, March 22, 2006
Appointments and CT scans and MRIs, Oh My!
This week I had the veritable motherlode of appointments. I had my usual blood draw/oncology team visit/infusion & pellet injection on Tuesday. I made sure to bring pictures of the wedding with me to show Lita, the Oncology nurse practitioner, who demanded them last time. (I also tossed in some of the wedding favors Brian's mom put together for her and Dr. Hayes.)
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
Labels: brain scan, Brian, CT scan, Dr. Hayes, Dr. Rodriguez, infusion, injection, Lita, mom, MRI, nausea, physical therapy, star trek, tumor marker, wedding
