Saturday, October 18, 2008
Birthday!
Any year I continue to suck air has to be cause for celebration. Or at least I certainly hope so.
I'm home, albeit with digestive difficulties (probably from the IV antibiotic). I also have swelly feet, legs and belly. But I'm extremely relieved I don't have to spend my birthday at the hospital.
I am 36 today and have been fêted for almost a week (if you don't count the early gift of the Amazon Kindle). My mom brought stuffed peppers and a Sweet Dreams Bakery cake (much like the one pictured) to the hospital last Sunday. Thursday she took Brian and me to Musashi for dinner, yesterday Brian finished hanging curtains for me and gave me the DVDs The Red Violin and Walk the Line. Today he took down the butt-ugly pool hall style light over the dining room table and is putting up my Ikea octopus light, "Hörby". Tonight he is taking me to a Red Wings (hockey) game. I'm not a hockey fan, but I'm excited and kind of hope there will be much violence.
Not that I have rage issues, or anything.
I'm home, albeit with digestive difficulties (probably from the IV antibiotic). I also have swelly feet, legs and belly. But I'm extremely relieved I don't have to spend my birthday at the hospital.
I am 36 today and have been fêted for almost a week (if you don't count the early gift of the Amazon Kindle). My mom brought stuffed peppers and a Sweet Dreams Bakery cake (much like the one pictured) to the hospital last Sunday. Thursday she took Brian and me to Musashi for dinner, yesterday Brian finished hanging curtains for me and gave me the DVDs The Red Violin and Walk the Line. Today he took down the butt-ugly pool hall style light over the dining room table and is putting up my Ikea octopus light, "Hörby". Tonight he is taking me to a Red Wings (hockey) game. I'm not a hockey fan, but I'm excited and kind of hope there will be much violence. Not that I have rage issues, or anything.
Labels: ascites, birthday, Brian, edema, hospital, mom
Wednesday, October 15, 2008
Hospital....Again
Thursday I began to get the extreme chills which indicated (as back in April) that I probably had a high fever and should go to the emergency room.
I didn't want to go to the emergency room.
So I took ibuprofen, and by the next morning my fever was back down. I had a conference to go to Friday at which I was to participate in two presentations. In my car, waiting for Barbara to show up to carpool people to Lansing, I started having violent chills. I took my temperature and it was 102.4. I heaved myself into Barbara's car and eventually (between bouts of violent tooth-chattering) told people I was feeling cold and had a fever. "If I can't move my hands without jerking them," I told Joel, "you might have to move the mouse." Beth let me wear her knitted wool scarf.
During the opening remarks, Barbara got someone to find me a blanket. By noon my temperature was about 104. I eventually stumbled into the presentation room with Joel, and we gave a presentation on "Google Analytics in the Web Opac" I hope people found interesting. I might have babbled.
The next presentation didn't require me to talk much, so I sat in the front with the blanket.
On the way home, Barbara suggested I sit in the heated passenger seat. Why aren't all car seats heated? Sigh. I was able to drive myself home from the carpool meeting site and called the cancer center. The triage nurse spoke to one of the nurse practitioners (and very wisely did not put that particular person on the phone with me) who said, "Go to the ER."
So I ended up at the ER with an initial diagnosis (after chest ex-ray) of a small touch of pneumonia.
Thursday my mom brought birthday cake, stuffed peppers for dinner, and presents! Presents! Ah loves me some presents. I got a glass murano-style giraffe from the zoo, a handmade cashmere hat and sweater, a penguin trivot, and some other things.
But testing resumed, and a blood culture showed rampaging E coli. Lucky me, either way! I stayed in the hospital long enough to get another paracentesis (they wanted to check to be sure whether the infection is in my belly fluid or not). My belly got so incredibly bloated it was causing my ribcage to expand painfully.
Once the tap was done and they decided what antibiotic I needed, the discharge people planned to let me go with a styrofoam cooler full of antibiotics I can administer to myself. They will be sending a visiting nurse to make sure I have all the steps right. (This is good as I am not at all sure I have the steps right).
Freedom! Sort of...
I didn't want to go to the emergency room.
So I took ibuprofen, and by the next morning my fever was back down. I had a conference to go to Friday at which I was to participate in two presentations. In my car, waiting for Barbara to show up to carpool people to Lansing, I started having violent chills. I took my temperature and it was 102.4. I heaved myself into Barbara's car and eventually (between bouts of violent tooth-chattering) told people I was feeling cold and had a fever. "If I can't move my hands without jerking them," I told Joel, "you might have to move the mouse." Beth let me wear her knitted wool scarf.
During the opening remarks, Barbara got someone to find me a blanket. By noon my temperature was about 104. I eventually stumbled into the presentation room with Joel, and we gave a presentation on "Google Analytics in the Web Opac" I hope people found interesting. I might have babbled.
The next presentation didn't require me to talk much, so I sat in the front with the blanket.
On the way home, Barbara suggested I sit in the heated passenger seat. Why aren't all car seats heated? Sigh. I was able to drive myself home from the carpool meeting site and called the cancer center. The triage nurse spoke to one of the nurse practitioners (and very wisely did not put that particular person on the phone with me) who said, "Go to the ER."
So I ended up at the ER with an initial diagnosis (after chest ex-ray) of a small touch of pneumonia.
Thursday my mom brought birthday cake, stuffed peppers for dinner, and presents! Presents! Ah loves me some presents. I got a glass murano-style giraffe from the zoo, a handmade cashmere hat and sweater, a penguin trivot, and some other things.
But testing resumed, and a blood culture showed rampaging E coli. Lucky me, either way! I stayed in the hospital long enough to get another paracentesis (they wanted to check to be sure whether the infection is in my belly fluid or not). My belly got so incredibly bloated it was causing my ribcage to expand painfully.
Once the tap was done and they decided what antibiotic I needed, the discharge people planned to let me go with a styrofoam cooler full of antibiotics I can administer to myself. They will be sending a visiting nurse to make sure I have all the steps right. (This is good as I am not at all sure I have the steps right).
Freedom! Sort of...
Labels: Brian, E. coli, ER, hospital, paracentesis, pneumonia, work
Friday, August 08, 2008
The Five-Year Mark
Five years ago today I had a biopsy. I was very surprised that my biopsy would involve taking out a golf-ball sized chunk since I thought biopsies consisted of taking a core sample with a needle. Both are true, but I didn't have a solid mass so they needed to do surgery. My biopsy was a guided wire procedure (which I will never submit to again) and I fainted while sitting at the mammogram machine. After the biopsy and after puking from the anesthesia, they let me go home.
I went to a computer training class the next day. I remember very clearly sitting in the classroom and that I had a PC in front of me and that the instructor wrote some stuff on the board. I remember that I walked to Einstein Bagel for lunch and I remember what I had to eat. I haven't the slightest idea of the content of the class, though. It was a class on cgi, which I haven't the slightest idea how to use.
The next week I had an appointment with the surgeon, who did not have the pathology results yet. I asked him if my breast (which looked very sad, bruised, and deflated) would return to a natural shape on its own, or what. He told me it would fill out on its own and to quit looking in the mirror.
A couple of days later, I got a call from the surgeon's office to set up another appointment to go over the results. It was strongly suggested that I have someone with me. Soon afterwards I got a very panicked call from my primary care physician. She was very nervous, and didn't know what to say. So she blurted out that she was so sorry that the results showed I had cancer.
I stood in my kitchen and thought, "No wonder they want somebody to come with me to see the surgeon."
"Ok," I said.
It wasn't really Ok.
Whatever happened to, "You're so young, these things are almost always nothing," or "3 out of 4 times it turns out to be harmless"? By the time I got to my biopsy, it was "You have a 90% chance of being totally fine."
My mom took me to the appointment. Dr. Barbi had a box of tissues, many explanatory brochures and pictures, as well as sample drains to show me what would be involved to care for the wounds. I sat there dully, listening to him say how lucky it was that this was caught early. When it's caught early, treatment is very successful.
I had a tiny bit of microinvasion. Some cells were beginning to escape the confines of the ducts, but he was satisfied that this was still extremely early. I needed to coordinate with a plastic surgeon, and there were two that he typically worked with. I called the first name on the list and then had surgery in November.
Tiny cells just starting to bust out.
Diagnosis in August, surgery in November. Was that too long? No, I was assured. Plus, I opted to do chemotherapy which was sure to take care of any pesky floating cancer cells. 98% success rate for the type of cancer I had.
I "sailed" through treatment. I was called a "trooper." Success!
And technically, I am a "success." It's one of the happier statistics that I can say I'm still alive five years after treatment. I had always assumed that this meant being disease free five years later, but it does not.
I kind of hoped for more.
I certainly didn't hope for a broken, mangled hip. I didn't hope for an enlarged spleen and ascites from a damaged liver. I didn't hope for tumors in my brain. I didn't hope for multiple hospitalizations both from the disease itself and secondary infections.
The fact that I feel reasonably well, although somewhat wimpy and water-logged is amazing, but I still carry around anger about what I perceive as the "lies" that I was told about this condition. I still wonder about the gap between diagnosis and treatment. I wonder about the lack of follow-up and certainty on the part of my doctors that my early-stage cancer was treated with spectacular success, which resulted in months of inappropriately treated agony.
And I wonder why the emphasis on "early detection" is more evident than research for treatment of people who are still alive after five years, but waiting for a cure.
I went to a computer training class the next day. I remember very clearly sitting in the classroom and that I had a PC in front of me and that the instructor wrote some stuff on the board. I remember that I walked to Einstein Bagel for lunch and I remember what I had to eat. I haven't the slightest idea of the content of the class, though. It was a class on cgi, which I haven't the slightest idea how to use.
The next week I had an appointment with the surgeon, who did not have the pathology results yet. I asked him if my breast (which looked very sad, bruised, and deflated) would return to a natural shape on its own, or what. He told me it would fill out on its own and to quit looking in the mirror.
A couple of days later, I got a call from the surgeon's office to set up another appointment to go over the results. It was strongly suggested that I have someone with me. Soon afterwards I got a very panicked call from my primary care physician. She was very nervous, and didn't know what to say. So she blurted out that she was so sorry that the results showed I had cancer.
I stood in my kitchen and thought, "No wonder they want somebody to come with me to see the surgeon."
"Ok," I said.
It wasn't really Ok.
Whatever happened to, "You're so young, these things are almost always nothing," or "3 out of 4 times it turns out to be harmless"? By the time I got to my biopsy, it was "You have a 90% chance of being totally fine."
My mom took me to the appointment. Dr. Barbi had a box of tissues, many explanatory brochures and pictures, as well as sample drains to show me what would be involved to care for the wounds. I sat there dully, listening to him say how lucky it was that this was caught early. When it's caught early, treatment is very successful.
I had a tiny bit of microinvasion. Some cells were beginning to escape the confines of the ducts, but he was satisfied that this was still extremely early. I needed to coordinate with a plastic surgeon, and there were two that he typically worked with. I called the first name on the list and then had surgery in November.
Tiny cells just starting to bust out.
Diagnosis in August, surgery in November. Was that too long? No, I was assured. Plus, I opted to do chemotherapy which was sure to take care of any pesky floating cancer cells. 98% success rate for the type of cancer I had.
I "sailed" through treatment. I was called a "trooper." Success!
And technically, I am a "success." It's one of the happier statistics that I can say I'm still alive five years after treatment. I had always assumed that this meant being disease free five years later, but it does not.
I kind of hoped for more.
I certainly didn't hope for a broken, mangled hip. I didn't hope for an enlarged spleen and ascites from a damaged liver. I didn't hope for tumors in my brain. I didn't hope for multiple hospitalizations both from the disease itself and secondary infections.
The fact that I feel reasonably well, although somewhat wimpy and water-logged is amazing, but I still carry around anger about what I perceive as the "lies" that I was told about this condition. I still wonder about the gap between diagnosis and treatment. I wonder about the lack of follow-up and certainty on the part of my doctors that my early-stage cancer was treated with spectacular success, which resulted in months of inappropriately treated agony.
And I wonder why the emphasis on "early detection" is more evident than research for treatment of people who are still alive after five years, but waiting for a cure.
Labels: ascites, biopsy, chemo, DCIS, Dr. Barbi, hip, hospital, liver, mammogram, mom, spleen, surgery
Tuesday, May 13, 2008
I Got Trapped in an Episode of "House"
Only one in which there was no brilliant, cranky Head Doctor who would come up with the solution and heal me of my infirmities.
A couple of weeks ago, during a visit by my mom on Sunday, I got very cold. Teeth-chatteringly cold. After our card game was over and she went home, I went to bed and huddled under many blankets. Brian discovered that I actually had a pretty high fever. So he called the oncologist on call, who suggested taking some tylenol and watching my temperature, and if there was no improvement, come to the hospital in the morning.
The next morning there wasn't an improvement (although I felt immensely better), so my nurse practitioner told me to come in, have blood drawn, get a chest ex-ray, and then go up to "bedside" in the infusion area (a opposed to the area where the infusion chairs are), where they got all freaked out about my "shortness of breath" (with my stomach all bloated, of course my lungs can't fill up really well), so they did the test where they do your blood pressure lying down, then sitting, then standing. They did this several times. Of course my blood pressure is very low to begin with, but it's especially erratic since they have to use either my right forearm or my leg.
Their results were so alarming that they decided I needed a CT scan of my chest. This makes me cry, because it means insertion of an IV. They eventually get the thing inserted, and then it turns out that the only CT machine available is in the ER...when I get down to ER, the CT technicians look at my IV and say, "Oh no, that one's too small." Blarrrrrg. So I get to cry again as they stab me again in the arm. They made a mess of it, too, and got blood on my fuzzy "Snoop Dog" hat. It also turns out that I have developed an allergy to the iodine conrast, so I couldn't breathe for a short while after the test. They didn't believe me and thought I was just "freaking out."
So they take me back to "bedside," where my oncologist agrees that I should be admitted.
Sadly they could not admit me directly to a room, but I had to go through ER. So I sat in triage in ER for several hours. Then a room opened up in ER and I had an EKG, many blood tests (with blood taken both from my port and from my arm) The ER doctor came in and told me my CT scan showed a pulmonary embolism. Then, no it was actually a "chronic embolism" which means it was a blood clot that was surrounded by other tissue and had been there for a long time and wasn't doing any harm, but perhaps I should have a mesh thingy surgically implanted to keep blood clots from my legs from reaching any vital organs.
Then they finally admitted me to the hospital proper, and I was put into a double room with a diabetic woman who had been there a month and complained constantly.
I can't say I blame her.
So then the doctors decided I didn't have an embolism at all, and that my low blood pressure/shortness of breath might be pneumonia or some kind of viral or bacterial infection. So they started giving me crazy amounts of antibiotics, at which point I developed horrible digestive issues. They had to bring me a bedside commode. They thought maybe whatever infection I was dealing with was making me anemic, so they decided to give me a blood transfusion. (It turns out I am type A-positive, which I did not know before).
They kept coming to test my blood--they had to take blood both from my port, and from another spot in my arm (in case it was the port that was infected)--and every test they wanted to do they told me, "We'll have the results in three days." But you already TOOK blood for tests and it's been three days....where are those results? Grrrrr.
I developed a dry cough (they were giving me oxygen at night because I was having some trouble getting enough air), so the respiratory people got all excited and wanted to give me this test where they made me breathe albuterol through a tube and then after a few minutes of this, spit sputum into a cup for testing. Well, my cough was a DRY cough. They were never able to get a sample from me, although they tried twice.
The freaky thing is that they also made my roommate do the albuterol thing and try to spit into the little cup, and then when she got discharged (after a month, the poor lady), and then they did it to the next roommate I had. I wonder if there was something going around the hospital, or what.
After about seven days of misery and crappy food and trying (sometimes unsuccessfully) to make it to the commode, they sent a physical therapist, who brought me a walker, a theraband, and a little pedal thing that sits on the floor and is sort of like a thing that makes whatever chair you're in into a recumbent bicycle. Great. Thanks, now I get to have a walker again. And the theraband was for my arms. I took the walker and theraband home; I'm not sure if I was supposed to keep the pedal thing or not, but I decided it was stupid and the hospital PT was useless. (I'm now getting PT at home, and she actually gave me USEFUL exercises to do.)
They never did decide what I might be infected with...if it was bacterial, viral, side effects from Xeloda, or what. So I got discharged after about nine days, just in time to go to Brian's graduation, weaker than I have been in a long time, coughing, and wearing a diaper.
Luckily I am getting stronger. I'm still wearing a diaper, though (at least I am today)...and I've got a bedside commode (which I have not needed yet, thank goodness because I've been sleeping very deeply), a walker for very long walks, and my feet swell up like sausages. I ranted to my oncologist and expressed relief that all the tests at least confirmed that I do not have EBOLA. I don't think he appreciated my outrage, because of course they've got my best interests in mind and are concerned for my welfare.
I FELT BETTER BEFORE BEING HOSPITALIZED.
Grrrrr. I hope there WAS some kind of bug floating around my system that got killed, because I'm pissed off and hate having to try to rebuild my strength and deal with the cough and the digestive issues. OH, also food is now disgusting to me I think because of the medications I've been given (usually antibiotics do this) or maybe the Xeloda itself is messing up my appetite. I don't have any nausea, it's just that when I put food into my mouth, it tastes all gross and metallic and I lose interest in swallowing it. It's even worse when there's a distinctive texture. It's sort of like I'll chew a mouthful of food, and then suddenly I realize that I have this nasty blob of chewed food in my mouth that I can't quite bring myself to swallow, but you can't spit it out.
I bet House could figure it out.
A couple of weeks ago, during a visit by my mom on Sunday, I got very cold. Teeth-chatteringly cold. After our card game was over and she went home, I went to bed and huddled under many blankets. Brian discovered that I actually had a pretty high fever. So he called the oncologist on call, who suggested taking some tylenol and watching my temperature, and if there was no improvement, come to the hospital in the morning.
The next morning there wasn't an improvement (although I felt immensely better), so my nurse practitioner told me to come in, have blood drawn, get a chest ex-ray, and then go up to "bedside" in the infusion area (a opposed to the area where the infusion chairs are), where they got all freaked out about my "shortness of breath" (with my stomach all bloated, of course my lungs can't fill up really well), so they did the test where they do your blood pressure lying down, then sitting, then standing. They did this several times. Of course my blood pressure is very low to begin with, but it's especially erratic since they have to use either my right forearm or my leg.
Their results were so alarming that they decided I needed a CT scan of my chest. This makes me cry, because it means insertion of an IV. They eventually get the thing inserted, and then it turns out that the only CT machine available is in the ER...when I get down to ER, the CT technicians look at my IV and say, "Oh no, that one's too small." Blarrrrrg. So I get to cry again as they stab me again in the arm. They made a mess of it, too, and got blood on my fuzzy "Snoop Dog" hat. It also turns out that I have developed an allergy to the iodine conrast, so I couldn't breathe for a short while after the test. They didn't believe me and thought I was just "freaking out."
So they take me back to "bedside," where my oncologist agrees that I should be admitted.
Sadly they could not admit me directly to a room, but I had to go through ER. So I sat in triage in ER for several hours. Then a room opened up in ER and I had an EKG, many blood tests (with blood taken both from my port and from my arm) The ER doctor came in and told me my CT scan showed a pulmonary embolism. Then, no it was actually a "chronic embolism" which means it was a blood clot that was surrounded by other tissue and had been there for a long time and wasn't doing any harm, but perhaps I should have a mesh thingy surgically implanted to keep blood clots from my legs from reaching any vital organs.
Then they finally admitted me to the hospital proper, and I was put into a double room with a diabetic woman who had been there a month and complained constantly.
I can't say I blame her.
So then the doctors decided I didn't have an embolism at all, and that my low blood pressure/shortness of breath might be pneumonia or some kind of viral or bacterial infection. So they started giving me crazy amounts of antibiotics, at which point I developed horrible digestive issues. They had to bring me a bedside commode. They thought maybe whatever infection I was dealing with was making me anemic, so they decided to give me a blood transfusion. (It turns out I am type A-positive, which I did not know before).
They kept coming to test my blood--they had to take blood both from my port, and from another spot in my arm (in case it was the port that was infected)--and every test they wanted to do they told me, "We'll have the results in three days." But you already TOOK blood for tests and it's been three days....where are those results? Grrrrr.
I developed a dry cough (they were giving me oxygen at night because I was having some trouble getting enough air), so the respiratory people got all excited and wanted to give me this test where they made me breathe albuterol through a tube and then after a few minutes of this, spit sputum into a cup for testing. Well, my cough was a DRY cough. They were never able to get a sample from me, although they tried twice.
The freaky thing is that they also made my roommate do the albuterol thing and try to spit into the little cup, and then when she got discharged (after a month, the poor lady), and then they did it to the next roommate I had. I wonder if there was something going around the hospital, or what.
After about seven days of misery and crappy food and trying (sometimes unsuccessfully) to make it to the commode, they sent a physical therapist, who brought me a walker, a theraband, and a little pedal thing that sits on the floor and is sort of like a thing that makes whatever chair you're in into a recumbent bicycle. Great. Thanks, now I get to have a walker again. And the theraband was for my arms. I took the walker and theraband home; I'm not sure if I was supposed to keep the pedal thing or not, but I decided it was stupid and the hospital PT was useless. (I'm now getting PT at home, and she actually gave me USEFUL exercises to do.)
They never did decide what I might be infected with...if it was bacterial, viral, side effects from Xeloda, or what. So I got discharged after about nine days, just in time to go to Brian's graduation, weaker than I have been in a long time, coughing, and wearing a diaper.
Luckily I am getting stronger. I'm still wearing a diaper, though (at least I am today)...and I've got a bedside commode (which I have not needed yet, thank goodness because I've been sleeping very deeply), a walker for very long walks, and my feet swell up like sausages. I ranted to my oncologist and expressed relief that all the tests at least confirmed that I do not have EBOLA. I don't think he appreciated my outrage, because of course they've got my best interests in mind and are concerned for my welfare.
I FELT BETTER BEFORE BEING HOSPITALIZED.
Grrrrr. I hope there WAS some kind of bug floating around my system that got killed, because I'm pissed off and hate having to try to rebuild my strength and deal with the cough and the digestive issues. OH, also food is now disgusting to me I think because of the medications I've been given (usually antibiotics do this) or maybe the Xeloda itself is messing up my appetite. I don't have any nausea, it's just that when I put food into my mouth, it tastes all gross and metallic and I lose interest in swallowing it. It's even worse when there's a distinctive texture. It's sort of like I'll chew a mouthful of food, and then suddenly I realize that I have this nasty blob of chewed food in my mouth that I can't quite bring myself to swallow, but you can't spit it out.
I bet House could figure it out.
Labels: Brian, CT scan, hospital, mom, physical therapy, Xeloda
Tuesday, March 25, 2008
Yay! Hospital Food!
I went to the clinic on Friday and got to speak with the nurse practitioner who is Lita's counterpart. I believe she tried to give me good information and assistance, but I don't think I will consent to speak with her again unless Lita has been hit by that mythical bus that's just aiming to kill everyone. I felt things were going fine until she asked me if I had ever had a conversation about ceasing treatment.
Huh? Why the would I be calling asking about my symptoms and trying like heck to get back on chemo if that were the case? Why would THIS be the time to be having such a discussion? I was very upset and later, extremely angry that she would say such a thing to me. She doesn't KNOW me. Perhaps she was attempting in some clumsy way to bring up the notion of advance directives, but I've already gone through that with other people and it's not her business. I don't know to whom I can complain about this, or maybe I should just let it go.
Anyway, after an early morning MRI on Saturday, I got a call from one of the doctors I saw initially about the brain mets that I should go back to the hospital immediately. I was able to go to the floor instead of being admitted to the ER, which streamlined things somewhat, but it did mean having to be in the hospital over night for who knows how long. The plan was to radiate my thoracic spine--the MRI showed that one of the two lesions on my spine had increased in size, and the one in the T9 area is poking into my spinal column, which may account for some of my recent symptoms (but not the shingles). This is seen as an immediate problem, since delaying action can result in, oh, say, paralysis.
Sigh.
I got a private room, which was kind of nice. I also had multiple radiation/neuro people come to my room to have me squeeze their hands, follow the light with my eyes, and have invasive procedures to test the muscle tone of an area one doesn't want to have evaluated multiple times unless one has that particular fetish.
I refused the third "evaluation."
Sleeping was also a problem as they have seen fit to up my decadron to 8mg a day. I finally saw the movie Brigadoon (I have a soft spot for Gene Kelly) and a number of shows on Animal Planet about some amazing dogs that have vastly improved the lives of their owners, including one lab puppy who kept running away from home to be with a lady who eventually had her breast cancer diagnosed after the dog became upset and was poking at her breast incessantly. Dogs have been trained to detect cancer cells by smell, but this dog just did it naturally.
I did get released on Easter; I was expecting to go to my mom's for dinner, but that just wasn't going to work out. Instead, after she arrived at the hospital only to find out that I had just been discharged, we all went back to Canton and Brian's parents showed up shortly afterwards.
I've had three radiation treatments so far; they've scheduled them all at 7am, which is hilarious. This time I don't have to wear a mask; they just have me up on the table. I will have ten treatments altogether, and it will be over April 2. I don't know how long I will have to recover from the radiation before they can resume the chemo. I really hope there are no more hurdles. My other things have to heal and we are all hoping I don't get some kind of inconvenient infection.
Huh? Why the
Anyway, after an early morning MRI on Saturday, I got a call from one of the doctors I saw initially about the brain mets that I should go back to the hospital immediately. I was able to go to the floor instead of being admitted to the ER, which streamlined things somewhat, but it did mean having to be in the hospital over night for who knows how long. The plan was to radiate my thoracic spine--the MRI showed that one of the two lesions on my spine had increased in size, and the one in the T9 area is poking into my spinal column, which may account for some of my recent symptoms (but not the shingles). This is seen as an immediate problem, since delaying action can result in, oh, say, paralysis.
Sigh.
I got a private room, which was kind of nice. I also had multiple radiation/neuro people come to my room to have me squeeze their hands, follow the light with my eyes, and have invasive procedures to test the muscle tone of an area one doesn't want to have evaluated multiple times unless one has that particular fetish.
I refused the third "evaluation."
Sleeping was also a problem as they have seen fit to up my decadron to 8mg a day. I finally saw the movie Brigadoon (I have a soft spot for Gene Kelly) and a number of shows on Animal Planet about some amazing dogs that have vastly improved the lives of their owners, including one lab puppy who kept running away from home to be with a lady who eventually had her breast cancer diagnosed after the dog became upset and was poking at her breast incessantly. Dogs have been trained to detect cancer cells by smell, but this dog just did it naturally.
I did get released on Easter; I was expecting to go to my mom's for dinner, but that just wasn't going to work out. Instead, after she arrived at the hospital only to find out that I had just been discharged, we all went back to Canton and Brian's parents showed up shortly afterwards.
I've had three radiation treatments so far; they've scheduled them all at 7am, which is hilarious. This time I don't have to wear a mask; they just have me up on the table. I will have ten treatments altogether, and it will be over April 2. I don't know how long I will have to recover from the radiation before they can resume the chemo. I really hope there are no more hurdles. My other things have to heal and we are all hoping I don't get some kind of inconvenient infection.
Labels: Brian, Decadron, hospital, Joyce, Lita, mom, MRI, radiation, Roger, shingles, spine
Tuesday, October 23, 2007
May Have Played the Cancer Card
This past weekend I drove to Cleveland to see my dad and visit with my Grandma, aunts, one uncle, and several of my cousin's kids. On the way there, I was pulled over by one of Michigan's finest. I was driving somewhat fast-ish, and figured I deserved a speeding ticket.
When he pulled me over and asked for my license, registration, and proof of insurance, I accidentally gave him the Saturn registration and utterly failed to find my proof of insurance (which turned out to be at home in a different purse). Then he pointed out to me that my license tags had expired. Of course...my birthday came and went. I completely forgot about renewing my tags as the Secretary of State had not seen fit--for the second time this year--to send a renewal notice. Then he also pointed out that the expired registration indicated the car was a four-door and not a two-door. "Were you aware of that?"
"No," I squeaked.
He went back to his vehicle and did whatever it is they do back there while you are squirming in your seat. I might have cried a little bit. I blew my nose.
When he came back, he told me he would let me off with a warning, but I needed to get it taken care of right away. "Be careful," he told me.
I was very surprised, since I actually had committed a number of offenses (although the only one I did on purpose involved the celerity with which I was zipping down the road). I had not put on a wig that day, figuring the back would just get tangled in the car and I'd swap the bandana for hair when I got closer to Grandma's house.
Maybe I inadvertently played the cancer card. Maybe he decided not to give the bald lady a ticket because he'd feel guilty doing it.
It does happen: I think people panic and become unsettled with somebody who looks visibly ill or different. I have on more than one occasion cut to the front of the baby frappuccino line at Race for the Cure. Hollywood stars get clothes and jewelry all the time for looking abnormally fabulous; have you ever seen the amazing bags of swag they get for going to the Oscars? No one's giving me iPods, furs, and expensive perfume. No one need be jealous of us if we play the card from time to time--whether we mean to or not.
Neupogen to boost your white blood cell count: $1000
A Year's worth of chemo and Avastin: $100,000
A trip to the ER for an emergency CT scan: $50
Getting out of a ticket because you're bald and feeble: priceless.
When he pulled me over and asked for my license, registration, and proof of insurance, I accidentally gave him the Saturn registration and utterly failed to find my proof of insurance (which turned out to be at home in a different purse). Then he pointed out to me that my license tags had expired. Of course...my birthday came and went. I completely forgot about renewing my tags as the Secretary of State had not seen fit--for the second time this year--to send a renewal notice. Then he also pointed out that the expired registration indicated the car was a four-door and not a two-door. "Were you aware of that?"
"No," I squeaked.
He went back to his vehicle and did whatever it is they do back there while you are squirming in your seat. I might have cried a little bit. I blew my nose.
When he came back, he told me he would let me off with a warning, but I needed to get it taken care of right away. "Be careful," he told me.
I was very surprised, since I actually had committed a number of offenses (although the only one I did on purpose involved the celerity with which I was zipping down the road). I had not put on a wig that day, figuring the back would just get tangled in the car and I'd swap the bandana for hair when I got closer to Grandma's house.
Maybe I inadvertently played the cancer card. Maybe he decided not to give the bald lady a ticket because he'd feel guilty doing it.
It does happen: I think people panic and become unsettled with somebody who looks visibly ill or different. I have on more than one occasion cut to the front of the baby frappuccino line at Race for the Cure. Hollywood stars get clothes and jewelry all the time for looking abnormally fabulous; have you ever seen the amazing bags of swag they get for going to the Oscars? No one's giving me iPods, furs, and expensive perfume. No one need be jealous of us if we play the card from time to time--whether we mean to or not.
Neupogen to boost your white blood cell count: $1000
A Year's worth of chemo and Avastin: $100,000
A trip to the ER for an emergency CT scan: $50
Getting out of a ticket because you're bald and feeble: priceless.
Labels: Avastin, baldness, birthday, chemo, CT scan, Dad, Grandma, hospital, Neupogen, Race for the Cure, vacation, wigs
Wednesday, October 10, 2007
Not Morg or Imorg
Today I feel like my own brain has been swiped.
I needed to have an MRI of my lower spine. In light of one of my complaints to Lita, she consulted with Dr. Hayes and wondered if there might be irritation of the nerve bundles in my lower spine, which has quite a bit of metastatic damage. Apparently, "irritated nerve bundles" can cause wacky symptoms that don't seem to have anything to do with the back. So U of M scheduled me for an MRI on October 10.
At 2:40 a.m.
That is not a typo.
Brian and I slogged out of bed and to the car at 1:45ish, and we got there slightly before 2:30. We weren't sure if we were supposed to park in the structure or use the ER parking valet, or what. We parked in what is the most poorly arranged parking structure ever, and then walked the loooong walk to the east elevators.
Having an MRI involves contrast dye, which the technician said was water soluble. I asked if they could inject it through a port, since it wasn't iodine contrast. "Yes," she said, "Is your port accessed? I don't have a nurse here at night so we can't access ports."
Great. So because of the asinine scheduling, I had to endure being stabbed three times, once in the crook of the arm (vein was too deep) and twice in the leathery scar-laden veins on my hand. People always think my hand veins are going to be good. They are mistaken.
We got home at five. I got up at eight to come to work. I am cranky and disoriented; a bad combination. I have bags.
Grrr.
I needed to have an MRI of my lower spine. In light of one of my complaints to Lita, she consulted with Dr. Hayes and wondered if there might be irritation of the nerve bundles in my lower spine, which has quite a bit of metastatic damage. Apparently, "irritated nerve bundles" can cause wacky symptoms that don't seem to have anything to do with the back. So U of M scheduled me for an MRI on October 10.
At 2:40 a.m.
That is not a typo.
Brian and I slogged out of bed and to the car at 1:45ish, and we got there slightly before 2:30. We weren't sure if we were supposed to park in the structure or use the ER parking valet, or what. We parked in what is the most poorly arranged parking structure ever, and then walked the loooong walk to the east elevators.
Having an MRI involves contrast dye, which the technician said was water soluble. I asked if they could inject it through a port, since it wasn't iodine contrast. "Yes," she said, "Is your port accessed? I don't have a nurse here at night so we can't access ports."
Great. So because of the asinine scheduling, I had to endure being stabbed three times, once in the crook of the arm (vein was too deep) and twice in the leathery scar-laden veins on my hand. People always think my hand veins are going to be good. They are mistaken.
We got home at five. I got up at eight to come to work. I am cranky and disoriented; a bad combination. I have bags.
Grrr.
Labels: Brian, Dr. Hayes, hospital, injection, Lita, MRI, port
Wednesday, September 19, 2007
A Familiar Problem "Rears" Its Ugly Head
I thought my news to report would be about scan results. It was getting time to post something; no fewer than four individual people (not including Brian) contacted me wanting to know how my scans went.
The bone scan was the same as last time, one blobule in the liver might be larger. The chest scan shows two teensy nodules which may be new, or may have been missed by previous scans. This past Tuesday it was decided that I would switch chemotherapies.
This past Tuesday was NOT my usual day to see Lita and Dr. Hayes. The reason I went in on what would have been a day at work, is that over the weekend I started experiencing rear-endal discomfort. Again. This time it was decidedly odd; it felt like my muscles were spasming and just couldn't relax. Oh, and last Thursday at work I peed a blood clot. And again on Sunday. Then Monday night my butt issues became decidedly even more uncomfortable, despite the ibuprofen and the sitz baths.
So Lita asked me to come in to be poked and prodded.
At the appointment (which was at noon), we decided to switch up chemotherapies because it looks like Abraxane just isn't working any more. (A year is not at all a bad run with a chemotherapy drug, so this isn't terrible.) I was offered the choice of Xeloda, which is chemo in pill form--and is purported to not cause hair loss--or Adriamycin, one of the ol' standbys for treating breast cancer, which has a ghastly reputation although Lita claims the side effects aren't that bad given how they will treat me.
I thought about it, and had eyebrows--glorious eyebrows!--briefly in my grasp. I asked for Xeloda. Then Dr. Hayes reconsidered based on the mouth sores Xeloda can cause; such sores can occur at the other end, too, and in light of my recurring discomfort, he doesn't want me to have it.
Then they asked me to go to the emergency room for further evaluation, since ailments of the behind are out of their realm of expertise. Brian and I went to lunch then went back to the ER to go to the hospital.
First we sat in a waiting room for a while. Then they came and took several vials of blood and wanted a urine sample. Then we went and sat in the combined patient/visitor waiting room for a couple of hours. Then I was called and they took us to a room where I changed into a gown. Then the fun began. Periodically technicians would come to take my vitals; I always have to explain the blood pressure issue (right forearm only). I got very thirsty and was not allowed water, although eventually somebody brought me a small cup of ice chips. A doctor came and got detailed information, then, after conferring with Lita, decided more cultures were needed so they would know what kind of exams they could do. So somebody came to access my port and get more blood--those were some of the biggest honkin' vials I've ever seen. Somebody also came with lidocaine gel, which should help soothe the discomfort and not have the icky effects I had with the last tube of cream the ER people gave me (nitroglycerin). After deciding my neutrophil count was too low, the doctor decided on a CT scan, but told me the barium wouldn't be necessary. I gave her two big thumbs up and decided I could bear the agony of the iodine contrast since there was to be no barfium! Woohoo!
About an hour later, a nurse walked in shaking a bottle of barium.
I cried.
Then someone came to try to insert an IV for the contrast. Tried, failed, and had to go get someone else. The man who came next pored over my arm for a while, and concluded he couldn't find a vein, so would have to call someone who has an ultrasound machine that helps find veins. About an hour (and a bottle of barium later) the new technician came by and when informed that I had a port, told me the ultrasound method was best for finding deep veins in the location where my port is, so wouldn't work for me. She did the painful tapping thing on my arm and was able to find a vein in my hand, so I finally got my IV.
In the meantime, the doctor came by again. By this time it was about 9p.m. She explained to me that the barium was necessary after all--or so she had been convinced by the radiologist--because otherwise if there was an abscess (I was pretty sure I didn't have one of THOSE), it wouldn't show up as distinct from any liquid contents of the bowels. She also informed me that since they wanted to be sure the barium had gone all the way through, I'd have to wait until after having a bowel movement before they could do the scan.
"Usually that happens about 3-4 hours after patients drink the barium preparation."
It wasn't enough that I, a patient in the ER with an observed fissure, was going to have to deal with the unpleasant aftereffects of barium knowing it was going to hurt like a mofo coming out, but finding out I was going to be at the hospital until the ridiculously wee hours was the final straw. I had a 9a.m. meeting scheduled for Wednesday. This couldn't be happening.
So we waited. My stomach burbled. We watched tv. Brian went to get himself a candy bar. Finally the nurse came and told me I'd have to provide another urine sample. I suspect it was a ruse to get me to the bathroom, but I can't be sure. In any case, the barium (painfully) did its work, and I got sent for the CT scan.
When the scan was over, the doctor came back to the room and told me her shift ended hours ago and that she was going home, but that I would have to wait 45 more minutes for the CT scan results.
"I can see you're upset," she said. "I can't blame you."
She could SEE I was upset because I had a nasty expression on my face and was a seething pile of misery and impotent rage. If my hand had not been impaired by an IV and my butt hadn't felt so bad, I would have launched out of the bed and throttled her.
She said she had explained my situation to her colleague, had left a prescription for a larger tube of gel, and that she was sorry I had to be there so late.
You and me both, lady.
The other doctor came by with the scan results when I had gotten up to go use the restroom again. I made sure to slam the door as loudly as I could and looked for supplies to pilfer.
There was no abscess. I know my doctors want to do the responsible thing and fully investigate things that could implode in my innards and kill me, but I am not submitting to this kind of marathon-ER thing again. I should have walked out when the barium walked in. We spent over twelve F*cking hours at the ER, and came away with "nope, no abscess" and a damn tube of gel. It was past two when we got home. And because of the lovely effects of drinking two bottles of stuff that insists on leaving your body in the most unpleasant way possible, I was not in bed until about 3:30.
I was so tired and disoriented when I got up this morning at 7 (I needed time to get ready for the day of work I absolutely could not miss--and I actually did make it in time. I deserve a medal) that when I staggered into the bathroom first thing to pee, I got very confused about a sensation of numbness when wiping myself that I just couldn't account for at first.
Until I noticed that I hadn't actually managed to pull down my underwear.
I hate the f*cking ER.
The bone scan was the same as last time, one blobule in the liver might be larger. The chest scan shows two teensy nodules which may be new, or may have been missed by previous scans. This past Tuesday it was decided that I would switch chemotherapies.
This past Tuesday was NOT my usual day to see Lita and Dr. Hayes. The reason I went in on what would have been a day at work, is that over the weekend I started experiencing rear-endal discomfort. Again. This time it was decidedly odd; it felt like my muscles were spasming and just couldn't relax. Oh, and last Thursday at work I peed a blood clot. And again on Sunday. Then Monday night my butt issues became decidedly even more uncomfortable, despite the ibuprofen and the sitz baths.
So Lita asked me to come in to be poked and prodded.
At the appointment (which was at noon), we decided to switch up chemotherapies because it looks like Abraxane just isn't working any more. (A year is not at all a bad run with a chemotherapy drug, so this isn't terrible.) I was offered the choice of Xeloda, which is chemo in pill form--and is purported to not cause hair loss--or Adriamycin, one of the ol' standbys for treating breast cancer, which has a ghastly reputation although Lita claims the side effects aren't that bad given how they will treat me.
I thought about it, and had eyebrows--glorious eyebrows!--briefly in my grasp. I asked for Xeloda. Then Dr. Hayes reconsidered based on the mouth sores Xeloda can cause; such sores can occur at the other end, too, and in light of my recurring discomfort, he doesn't want me to have it.
Then they asked me to go to the emergency room for further evaluation, since ailments of the behind are out of their realm of expertise. Brian and I went to lunch then went back to the ER to go to the hospital.
First we sat in a waiting room for a while. Then they came and took several vials of blood and wanted a urine sample. Then we went and sat in the combined patient/visitor waiting room for a couple of hours. Then I was called and they took us to a room where I changed into a gown. Then the fun began. Periodically technicians would come to take my vitals; I always have to explain the blood pressure issue (right forearm only). I got very thirsty and was not allowed water, although eventually somebody brought me a small cup of ice chips. A doctor came and got detailed information, then, after conferring with Lita, decided more cultures were needed so they would know what kind of exams they could do. So somebody came to access my port and get more blood--those were some of the biggest honkin' vials I've ever seen. Somebody also came with lidocaine gel, which should help soothe the discomfort and not have the icky effects I had with the last tube of cream the ER people gave me (nitroglycerin). After deciding my neutrophil count was too low, the doctor decided on a CT scan, but told me the barium wouldn't be necessary. I gave her two big thumbs up and decided I could bear the agony of the iodine contrast since there was to be no barfium! Woohoo!
About an hour later, a nurse walked in shaking a bottle of barium.
I cried.
Then someone came to try to insert an IV for the contrast. Tried, failed, and had to go get someone else. The man who came next pored over my arm for a while, and concluded he couldn't find a vein, so would have to call someone who has an ultrasound machine that helps find veins. About an hour (and a bottle of barium later) the new technician came by and when informed that I had a port, told me the ultrasound method was best for finding deep veins in the location where my port is, so wouldn't work for me. She did the painful tapping thing on my arm and was able to find a vein in my hand, so I finally got my IV.
In the meantime, the doctor came by again. By this time it was about 9p.m. She explained to me that the barium was necessary after all--or so she had been convinced by the radiologist--because otherwise if there was an abscess (I was pretty sure I didn't have one of THOSE), it wouldn't show up as distinct from any liquid contents of the bowels. She also informed me that since they wanted to be sure the barium had gone all the way through, I'd have to wait until after having a bowel movement before they could do the scan.
"Usually that happens about 3-4 hours after patients drink the barium preparation."
It wasn't enough that I, a patient in the ER with an observed fissure, was going to have to deal with the unpleasant aftereffects of barium knowing it was going to hurt like a mofo coming out, but finding out I was going to be at the hospital until the ridiculously wee hours was the final straw. I had a 9a.m. meeting scheduled for Wednesday. This couldn't be happening.
So we waited. My stomach burbled. We watched tv. Brian went to get himself a candy bar. Finally the nurse came and told me I'd have to provide another urine sample. I suspect it was a ruse to get me to the bathroom, but I can't be sure. In any case, the barium (painfully) did its work, and I got sent for the CT scan.
When the scan was over, the doctor came back to the room and told me her shift ended hours ago and that she was going home, but that I would have to wait 45 more minutes for the CT scan results.
"I can see you're upset," she said. "I can't blame you."
She could SEE I was upset because I had a nasty expression on my face and was a seething pile of misery and impotent rage. If my hand had not been impaired by an IV and my butt hadn't felt so bad, I would have launched out of the bed and throttled her.
She said she had explained my situation to her colleague, had left a prescription for a larger tube of gel, and that she was sorry I had to be there so late.
You and me both, lady.
The other doctor came by with the scan results when I had gotten up to go use the restroom again. I made sure to slam the door as loudly as I could and looked for supplies to pilfer.
There was no abscess. I know my doctors want to do the responsible thing and fully investigate things that could implode in my innards and kill me, but I am not submitting to this kind of marathon-ER thing again. I should have walked out when the barium walked in. We spent over twelve F*cking hours at the ER, and came away with "nope, no abscess" and a damn tube of gel. It was past two when we got home. And because of the lovely effects of drinking two bottles of stuff that insists on leaving your body in the most unpleasant way possible, I was not in bed until about 3:30.
I was so tired and disoriented when I got up this morning at 7 (I needed time to get ready for the day of work I absolutely could not miss--and I actually did make it in time. I deserve a medal) that when I staggered into the bathroom first thing to pee, I got very confused about a sensation of numbness when wiping myself that I just couldn't account for at first.
Until I noticed that I hadn't actually managed to pull down my underwear.
I hate the f*cking ER.
Labels: Abraxane, Adriamycin, baldness, barium, bone scan, Brian, CT scan, Dr. Hayes, fissure, hospital, IV, Lita, liver, lungs, Xeloda
Thursday, July 26, 2007
I got Meeboed! And I missed it...Plus, an Update
To the person who Meeboed Me at 11:02 today, Hi! I'm sorry I was actually away from the computer and forgot to select "away" from among the Meebo options. I missed you by about 15 minutes.
To answer your question, no I am not currently in remission. I have blobby tumors in my liver for which I regularly receive Abraxane and Avastin. I am doing reasonably well, however. A year and a half ago I couldn't walk and felt sick all the time. Now (aside from baldness, gross fingernails, and an unrelated issue of the rear endal area) I feel pretty good and am not afraid that my bones will snap like so many dried twigs.
I am also able to receive offline Meebo messages; feel free to leave me a message (like Grace did--Hi Grace! I was very glad to hear from you. I hope things are going very well). Let me know who you are, too.
Rear Endal Update
I spent yesterday at the Emergency Room on the advice of my general practitioner, who consulted with the specialist at her office who suggested he wouldn't be able to do an internal exam either without causing pain and distress.
The night before, I took a very strong pain medication which resulted in my feeling sick that night and the next day. I was revisited by breakfast, and when we showed up at the ER, I had to ask Brian to get me one of the familiar pink bins immediately. I had difficulty explaining to the people at the reception area that I was not there because of nausea and vomiting: "I have--BLLLAAAAAAAARRRRRRKKKKKKKK--a fissure, or--GUUURRRRK--hemorrhoid or--URP--something..."
They were very concerned about the nausea and gave me Zofran. Then, after answering repeated questions about what I felt my symptoms were, I had external exams performed both by the ER doctor and the consulting surgeons. The first located what is likely the cause of my pain, thought it might be a fistula, and squooshed it. Then the surgeon located it, noted a fissure and that there was nothing to squoosh: "See that crater?"
The surgical team concluded that there was nothing warranting surgery at this time, and the lead surgeon pointed out that any surgical procedure they could do would have a high likelihood of some unfortunate consequences. I am reminded of the following from Monty Python's Life of Brian:
I can't say I'm sorry to have avoided surgery, but the medical professionals were not able to provide me with any relief for my...issue.
"Use a Sitz bath." Great. I don't personally object to sitting my butt in a bath of warm water, but I'm not convinced this will help relieve my discomfort when water stings.
They also gave me a cream which is a vasodialator and is apparently made of hot sauce. I have used it once and do not plan to do so again.
I have concluded that the solution to what ails me is to simply never poop again. I find this a highly logical and practical thing and will put it into effect immediately. I am not joking about this.
To answer your question, no I am not currently in remission. I have blobby tumors in my liver for which I regularly receive Abraxane and Avastin. I am doing reasonably well, however. A year and a half ago I couldn't walk and felt sick all the time. Now (aside from baldness, gross fingernails, and an unrelated issue of the rear endal area) I feel pretty good and am not afraid that my bones will snap like so many dried twigs.
I am also able to receive offline Meebo messages; feel free to leave me a message (like Grace did--Hi Grace! I was very glad to hear from you. I hope things are going very well). Let me know who you are, too.
Rear Endal Update
I spent yesterday at the Emergency Room on the advice of my general practitioner, who consulted with the specialist at her office who suggested he wouldn't be able to do an internal exam either without causing pain and distress.
The night before, I took a very strong pain medication which resulted in my feeling sick that night and the next day. I was revisited by breakfast, and when we showed up at the ER, I had to ask Brian to get me one of the familiar pink bins immediately. I had difficulty explaining to the people at the reception area that I was not there because of nausea and vomiting: "I have--BLLLAAAAAAAARRRRRRKKKKKKKK--a fissure, or--GUUURRRRK--hemorrhoid or--URP--something..."
They were very concerned about the nausea and gave me Zofran. Then, after answering repeated questions about what I felt my symptoms were, I had external exams performed both by the ER doctor and the consulting surgeons. The first located what is likely the cause of my pain, thought it might be a fistula, and squooshed it. Then the surgeon located it, noted a fissure and that there was nothing to squoosh: "See that crater?"
The surgical team concluded that there was nothing warranting surgery at this time, and the lead surgeon pointed out that any surgical procedure they could do would have a high likelihood of some unfortunate consequences. I am reminded of the following from Monty Python's Life of Brian:
Pontius Pilate: He has a wife, you know. You know what she's called? She's called... 'Incontinentia'... Incontinentia Buttocks
Pontius Pilate: [Guards are laughing] Stop! What is all this?
Pontius Pilate: [Laughing continues] I've had enough of this wowdy webel sniggewing behaviour. Silence! Call yourselves Pwaetowian guards?.
I can't say I'm sorry to have avoided surgery, but the medical professionals were not able to provide me with any relief for my...issue.
"Use a Sitz bath." Great. I don't personally object to sitting my butt in a bath of warm water, but I'm not convinced this will help relieve my discomfort when water stings.
They also gave me a cream which is a vasodialator and is apparently made of hot sauce. I have used it once and do not plan to do so again.
I have concluded that the solution to what ails me is to simply never poop again. I find this a highly logical and practical thing and will put it into effect immediately. I am not joking about this.
Labels: Brian, fissure, hemorrhoids, hospital, Meebo, nausea
Saturday, May 12, 2007
Story Corps
Brian and I went to downtown Detroit today to record an interview with Story Corps. Brian was the interviewer, and I responded to his questions, which were primarily about my illness and what I see for the future. Our session, forty minutes long, was recorded and will be sent to the Library of Congress.
What's a little bit embarrassing is that we got a Story Corps interview with something called the "Griot Initiative," which is dedicated to recording the stories of African Americans for posterity, with a special emphasis on World War II veterans and people involved in the Civil Rights struggle. The interviews in Detroit will also go to the Charles H. Wright Museum of African-American History. We don't exactly fit the sought-after demographic for the Griot Initiative, but were advised to come to the appointment anyway.
Brian had a list of questions which he prepared in advance based on suggestions from the Story Corps site. At first he asked me who the most influential person in my life was, what my most memorable moment with him was, and then he asked me about what I see in the future.
I don't think the sound engineer was prepared for what he heard.
I don't know how much "future" I will have. I certainly don't see children in my future, or adoption. I talked about being diagnosed years ago, how shocking it was, how "lucky" I had been told I was, and about the fact that even before we met I had told him over the phone that I was healed and would not have to worry about cancer again. When I got my official diagnosis and had to tell my family, I called my mom from the parking lot at the doctor's office, and then went home to tell Brian I had essentially lied to him before we met. I was afraid I was going home to tell him news that would make him pack up and leave; I'm not sure I would have blamed him.
He tells me not to worry that I "lied."
We talked about how afraid we both were when I was hospitalized. I remember having a conversation with my mom (at this point Brian was looking for apartments without stairs to move into) about how I always thought that when the time came to move out of my apartment, it would be to move into a house or a condo, and that it didn't seem that signing a 30-year mortgage would be possible. My horizon loomed very close and my life today was unimaginable to me then, wracked with pain, unable to walk, and in a hospital bed surrounded by bins to vomit into.
I am happy to be wrong. I'm happy to feel better and am happy to be less afraid that I will die soon. I have to make it at least nine more years because Brian has promised me an anniversary diamond.
We have a copy of the interview on CD. The recording engineer was very moved; he told us that both of his parents have cancer, so he at least knows what it's like to be the other person in that situation. He also pointed out that our being a part of the Griot Initiative, well, it didn't matter that we are white because what we talked about was really universal.
I wish cancer wasn't universal and that it didn't touch on almost everybody's lives.
What's a little bit embarrassing is that we got a Story Corps interview with something called the "Griot Initiative," which is dedicated to recording the stories of African Americans for posterity, with a special emphasis on World War II veterans and people involved in the Civil Rights struggle. The interviews in Detroit will also go to the Charles H. Wright Museum of African-American History. We don't exactly fit the sought-after demographic for the Griot Initiative, but were advised to come to the appointment anyway.
Brian had a list of questions which he prepared in advance based on suggestions from the Story Corps site. At first he asked me who the most influential person in my life was, what my most memorable moment with him was, and then he asked me about what I see in the future.
I don't think the sound engineer was prepared for what he heard.
I don't know how much "future" I will have. I certainly don't see children in my future, or adoption. I talked about being diagnosed years ago, how shocking it was, how "lucky" I had been told I was, and about the fact that even before we met I had told him over the phone that I was healed and would not have to worry about cancer again. When I got my official diagnosis and had to tell my family, I called my mom from the parking lot at the doctor's office, and then went home to tell Brian I had essentially lied to him before we met. I was afraid I was going home to tell him news that would make him pack up and leave; I'm not sure I would have blamed him.
He tells me not to worry that I "lied."
We talked about how afraid we both were when I was hospitalized. I remember having a conversation with my mom (at this point Brian was looking for apartments without stairs to move into) about how I always thought that when the time came to move out of my apartment, it would be to move into a house or a condo, and that it didn't seem that signing a 30-year mortgage would be possible. My horizon loomed very close and my life today was unimaginable to me then, wracked with pain, unable to walk, and in a hospital bed surrounded by bins to vomit into.
I am happy to be wrong. I'm happy to feel better and am happy to be less afraid that I will die soon. I have to make it at least nine more years because Brian has promised me an anniversary diamond.
We have a copy of the interview on CD. The recording engineer was very moved; he told us that both of his parents have cancer, so he at least knows what it's like to be the other person in that situation. He also pointed out that our being a part of the Griot Initiative, well, it didn't matter that we are white because what we talked about was really universal.
I wish cancer wasn't universal and that it didn't touch on almost everybody's lives.
Labels: Brian, condominium, detroit, hospital, mom, story corps
Wednesday, February 07, 2007
Anniversary!
For a while I've been marking cancerversaries. November 5: my surgery date. November 3: second bone scan and confirmation of metastatic disease. December: hospital stay. I don't think I will be able to forget and keep from feeling unease when late fall rolls around again, but a new marker of passing time is coming up.
February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.
February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.
February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.
February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.
Labels: anniversary, bone scan, Brian, cancerversary, fentanyl, hospital, metastasis, motorcycle, surgery, walker, wedding, wheelchair
Tuesday, January 16, 2007
Ok, Break's Over: now where did I put that mandible?
It was nice while it lasted.
I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.
So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.
I got my results today.
The Good News
My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.
What a difference a year makes.
The Bad News
The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.
Alas, this also does mean I have to resume enduring Neupogen shots. :(
The Freaky News
Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.
Yuck.
They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.
Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.
I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.
So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.
I got my results today.
The Good News
My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.
What a difference a year makes.
The Bad News
The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.
Alas, this also does mean I have to resume enduring Neupogen shots. :(
The Freaky News
Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.
Yuck.
They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.
Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.
Labels: Abraxane, Avastin, barium, blood tests, bone scan, Brian, chemo, CT scan, Dr. Hayes, hospital, Lita, liver, metastasis, Neupogen, tumor marker, Zometa
Monday, April 17, 2006
Unwelcome surprise: how my hospital bill nearly put me in the hospital
My insurance company sends me periodic statements when they get billed for service by hospitals, physicians, medical professionals, et al. indicating how much money they asked for, how much they actually got, and how much I might owe.
Usually they get far less than they ask for but they seem to be ok with that.
If I ever do have to pay anything, it's usually either a $15 copay or a $30 copay for something I didn't get a referral for. I also once had a statement saying I owed $50, and that turns out to be the amount I owe for ER service if I don't manage to get a referral in the middle of an emergency. I went to the ER the day after I broke my hip and they didn't actually bill me that day, so I got a statement from M-Care telling me that I owed $50. I didn't argue; it's printed on my M-Care card.
This is why when I got a bill from the hospital for $2545.80, I nearly had a coronary, which would have required paying another $50 for an emergency visit to the ER. I got very depressed about this because I was anticipating a nice tax refund from the IRS, and am hoping to buy a new car soon because we have two very unreliable vehicles, and it's time to get something that doesn't make funny noises that make you wonder "Did I ever hear that noise before? Is that normal? Will I be able to afford the next repair bill on this thing?"
$2545.80. It came on Friday and informed me I had fourteen days to pay in full, or it would go to a collection agency, so naturally I was unable to do anything about it and had to worry all weekend.
This morning I called the hospital, and they weren't really able to tell me what the payment was for. So after physical therapy (I got treated once more with electrodes to the butt...my superpowers are going to manifest this time for sure) today I called the insurance company. After being put on hold for several minutes, the lady's conclusion was that it looked like a filing error and she said she would call me back if she found out otherwise.
I hope the phone doesn't ring soon.
Usually they get far less than they ask for but they seem to be ok with that.
If I ever do have to pay anything, it's usually either a $15 copay or a $30 copay for something I didn't get a referral for. I also once had a statement saying I owed $50, and that turns out to be the amount I owe for ER service if I don't manage to get a referral in the middle of an emergency. I went to the ER the day after I broke my hip and they didn't actually bill me that day, so I got a statement from M-Care telling me that I owed $50. I didn't argue; it's printed on my M-Care card.
This is why when I got a bill from the hospital for $2545.80, I nearly had a coronary, which would have required paying another $50 for an emergency visit to the ER. I got very depressed about this because I was anticipating a nice tax refund from the IRS, and am hoping to buy a new car soon because we have two very unreliable vehicles, and it's time to get something that doesn't make funny noises that make you wonder "Did I ever hear that noise before? Is that normal? Will I be able to afford the next repair bill on this thing?"
$2545.80. It came on Friday and informed me I had fourteen days to pay in full, or it would go to a collection agency, so naturally I was unable to do anything about it and had to worry all weekend.
This morning I called the hospital, and they weren't really able to tell me what the payment was for. So after physical therapy (I got treated once more with electrodes to the butt...my superpowers are going to manifest this time for sure) today I called the insurance company. After being put on hold for several minutes, the lady's conclusion was that it looked like a filing error and she said she would call me back if she found out otherwise.
I hope the phone doesn't ring soon.
Labels: hip, hospital, insurance, physical therapy, superpowers
Thursday, February 23, 2006
Two days before the wedding
It's two days before my wedding, I'm still fighting nausea, and there's an awful lot of backstory to cover.
I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.
Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.
I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.
At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.
So I moved to the room where I would spend my Christmas.
On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.
Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.
I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.
Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.
Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.
The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"
I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.
Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.
I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.
At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.
So I moved to the room where I would spend my Christmas.
On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.
Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.
I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.
Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.
Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.
The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"
Labels: anxiety, Brian, doctorlets, Grandma, hip, hospital, mom, nausea, physical therapy, spasms, stairs, walker, wedding, wheelchair
Monday, February 06, 2006
I Am Not a Ragdoll (or, Use the slide board, for the love of God!)
On floor 6A of the hospital I underwent ten sessions of radiation, any number of tests including X-rays and MRIs, and a liver biopsy, which were all terrible in their own way, but I'm going to spend a little time talking about transportation of people with hip fractures.
I know I've mentioned the unbearable, excruciating pain. They had to prescribe liquid morphine so that I could take something to make being moved bearable. There was also some kind of intravenous thing they were giving me that put me into a twilight state that was blessedly numbing. What they do to move a patient onto the transport table is that they get four to six people to grab the extra sheet under the patient (called the "draw sheet"). Everybody grabs an edge of the sheet and then they try to coordinate efforts and heave on the count of three. I found this method to be invariably awful.
On one of the occasions when I was to be moved, I started to cry and somebody promised that a "slide board," which is a slippery body-length board which the patient and draw sheet can be slid over, would make everything better. When the nurses and assistants and orderlies used the slide board, it worked amazingly well. There was no friction. My legs moved at the same time as my hips which moved at the same time as my upper torso...Unbelievable! The people in radiation were good at moving patients without causing any kind of pain (they're used to dealing with people who might have broken spinal things), but for the nursing staff on 6A to do it was amazing. I begged them to use it every time, but there were one or two people who insisted it didn't work or didn't make things any easier. The last example of this was the "kindly" man who directed my transfer when I had to go get my liver biopsied.
John was leaving to go back to Chattanooga, and I was already very sad about that. I don't see my brother often, and when he made plans to come and visit me in Detroit, I'm sure he didn't intend to spend the time visiting the hospital and packing books in my apartment. He looked at me funny when I said I was sorry his trip wasn't better.
Then, when the person directing my transfer made no moves to use the slideboard, I lost it and began sobbing uncontrollably, which never helps with the pain issue. "Now you have to relax," I was told. "It makes it worse if you don't relax."
What makes it worse, a**h***, is being told to f****** relax when you're about to heave and plop me onto a table, while telling me that if it hurts, it's somehow my fault.
Being moved was awful. I cried long after the pain subsided, though. I sat in the surgical waiting/recovery area and sobbed. Everything was awful. I hurt; John was leaving; I was frightened of the biopsy.
I was even more frightened when I found out that this is not something they knock you out for. It was an ultrasound-guided procedure, and I guess they needed me conscious so that they could tell me to not inhale at a certain point, since they insert the biopsy needle in between a couple of ribs.
That's right. They stab you in the chest while you are conscious, and ask you to please not squirm around as they're digging for the right spot.
"Don't worry," the anesthesiologist told me when I appeared apprehensive. "We'll give you a fentanyl drip and you won't feel much discomfort at all. He was not happy when I told him I was already on a fentanyl patch...I guess either he gave me something completely different or reduced the dosage, and the biopsy hurt like hell.
I will never again submit to such a procedure. They'd best not plan anything involving stabbing and searching unless I am totally unconcious for the procedure, because I will resist to the utmost of my ability, particularly if they try to claim that I "won't feel a thing!"
Liars.
They had to try separating my ribs twice, because the first time they jabbed, the needle bounced off. Then, after more careful poking and prodding with the fingers, they jabbed me in a gap between two ribs and inserted. They told me internal organs don't have nerve endings, so I shouldn't feel pain, but I swear I could feel the resistance as the needle encountered different kinds of tissue. So I experienced pain from the initial stab wound and knew exactly when it encountered the liver. I could feel it, and they had to work the needle around a bit to find the "right" spot indicated by the ultrasound.
After it was over and I was back in my room, the radiation team came to get me, but I refused to go. I'd had it; I didn't want to be moved any more, and I exercised my right as a patient to refuse treatment (they did make up for it later).
The next day, the doctor and his accompanying doctorlets were shocked to find out that the biopsy was very painful and that my chest still hurt where the needle went in. To his credit, the doctor was very concerned that I seemed to have anxiety about being seen by them, and that they weren't really able to do much to help me. I said what would help would be if they could always use the slide board to move me, so he agreed to write it as an order in my chart. Being moved was much better after that; I no longer dreaded being moved, I didn't have to take the liquid morphine as frequently, and I started having some positive feelings about the doctor and his interns.
Also, I stopped feeling shy about being moved with the slideboard. I vigilantly reminded people that it was there, and that they were to use it or I wasn't going wherever they wanted to take me.
To be continued...
I know I've mentioned the unbearable, excruciating pain. They had to prescribe liquid morphine so that I could take something to make being moved bearable. There was also some kind of intravenous thing they were giving me that put me into a twilight state that was blessedly numbing. What they do to move a patient onto the transport table is that they get four to six people to grab the extra sheet under the patient (called the "draw sheet"). Everybody grabs an edge of the sheet and then they try to coordinate efforts and heave on the count of three. I found this method to be invariably awful.
On one of the occasions when I was to be moved, I started to cry and somebody promised that a "slide board," which is a slippery body-length board which the patient and draw sheet can be slid over, would make everything better. When the nurses and assistants and orderlies used the slide board, it worked amazingly well. There was no friction. My legs moved at the same time as my hips which moved at the same time as my upper torso...Unbelievable! The people in radiation were good at moving patients without causing any kind of pain (they're used to dealing with people who might have broken spinal things), but for the nursing staff on 6A to do it was amazing. I begged them to use it every time, but there were one or two people who insisted it didn't work or didn't make things any easier. The last example of this was the "kindly" man who directed my transfer when I had to go get my liver biopsied.
John was leaving to go back to Chattanooga, and I was already very sad about that. I don't see my brother often, and when he made plans to come and visit me in Detroit, I'm sure he didn't intend to spend the time visiting the hospital and packing books in my apartment. He looked at me funny when I said I was sorry his trip wasn't better.
Then, when the person directing my transfer made no moves to use the slideboard, I lost it and began sobbing uncontrollably, which never helps with the pain issue. "Now you have to relax," I was told. "It makes it worse if you don't relax."
What makes it worse, a**h***, is being told to f****** relax when you're about to heave and plop me onto a table, while telling me that if it hurts, it's somehow my fault.
Being moved was awful. I cried long after the pain subsided, though. I sat in the surgical waiting/recovery area and sobbed. Everything was awful. I hurt; John was leaving; I was frightened of the biopsy.
I was even more frightened when I found out that this is not something they knock you out for. It was an ultrasound-guided procedure, and I guess they needed me conscious so that they could tell me to not inhale at a certain point, since they insert the biopsy needle in between a couple of ribs.
That's right. They stab you in the chest while you are conscious, and ask you to please not squirm around as they're digging for the right spot.
"Don't worry," the anesthesiologist told me when I appeared apprehensive. "We'll give you a fentanyl drip and you won't feel much discomfort at all. He was not happy when I told him I was already on a fentanyl patch...I guess either he gave me something completely different or reduced the dosage, and the biopsy hurt like hell.
I will never again submit to such a procedure. They'd best not plan anything involving stabbing and searching unless I am totally unconcious for the procedure, because I will resist to the utmost of my ability, particularly if they try to claim that I "won't feel a thing!"
Liars.
They had to try separating my ribs twice, because the first time they jabbed, the needle bounced off. Then, after more careful poking and prodding with the fingers, they jabbed me in a gap between two ribs and inserted. They told me internal organs don't have nerve endings, so I shouldn't feel pain, but I swear I could feel the resistance as the needle encountered different kinds of tissue. So I experienced pain from the initial stab wound and knew exactly when it encountered the liver. I could feel it, and they had to work the needle around a bit to find the "right" spot indicated by the ultrasound.
After it was over and I was back in my room, the radiation team came to get me, but I refused to go. I'd had it; I didn't want to be moved any more, and I exercised my right as a patient to refuse treatment (they did make up for it later).
The next day, the doctor and his accompanying doctorlets were shocked to find out that the biopsy was very painful and that my chest still hurt where the needle went in. To his credit, the doctor was very concerned that I seemed to have anxiety about being seen by them, and that they weren't really able to do much to help me. I said what would help would be if they could always use the slide board to move me, so he agreed to write it as an order in my chart. Being moved was much better after that; I no longer dreaded being moved, I didn't have to take the liquid morphine as frequently, and I started having some positive feelings about the doctor and his interns.
Also, I stopped feeling shy about being moved with the slideboard. I vigilantly reminded people that it was there, and that they were to use it or I wasn't going wherever they wanted to take me.
To be continued...
Labels: biopsy, doctorlets, fentanyl, fracture, hip, hospital, John, liver, morphine, MRI, radiation, slide board, x-rays
Sunday, February 05, 2006
Lesson Learned on 6A: be a squeaky wheel
The attending physician on floor 6A was usually preceeded by one of his interns, who would come to ask questions, take vitals, poke and prod, and ask me to breathe so he could listen with a stethescope. Then the full-fledged doctor would show up, with a group of two or more of his interns (I called them "doctorlets"), and repeat the process, which never elicited any new or exciting information. The typical questions were always: "How's your pain?" and "Any shortness of breath?" or "How are your bowels?" or "Much of an appetite?"
They would provide medication based on my answers, which gradually resulted in my taking, in addition to the patch I already had, an increased dosage on the patch, pills for pain (a narcotic and ibuprofen), pills for muscle spasms, muscle relaxing pills, pills for promoting bowel movements, pills for softening stools, pills for stomach health, pills for sleeping, pills for depressions, pills for anxiety, a powder mixed with liquid for--well, they were never able to really clarify what the Nutri-phos is for (I think it might be something like pedialyte)--either an injection of a very powerful opiate or liquid morphine taken orally when I was to be moved, and an incredibly painful shot for preventing blood clots that felt like a bee sting and which I decided might have consisted of concentrated bee venom. After having been immobile for several weeks and on various narcotic products, my digestive system was seriously backed up, which was leading to the abdominal pain and spleen/gallbladder symptoms. So they decided to step up the cleansing of the alimentary canal and also prescribed things intended to flush the colon from every conceivable direction. Yes. You know what I'm talking about. Mercifully by this time I had a private room.
Naturally, I came to dread visits by the attending and his little doctorlets. They were torturing me. Every time they came to visit, I found myself getting nauseous and vomit-y. When my dad and Susan came into town, they took over talking to the doctors when they could (the timing of their visits meant that sometimes they'd miss him and his posse on rounds), and would even leave the room to talk about topics that seemed to turn me green.
I was not in a good way.
When I got moved to my private room, I might have looked forward to getting more individual attention and care from the nursing staff. I now know that this does not necessarily happen.
One of the things the doctors told me is that I needed to drink as much as I could. Take in fluids at all times. Any fluids. Juice, water, milk, anything. I didn't seem to be getting any water, although they did have me on an iv. Also, food is important to get the bowels moving. I needed to keep my digestion working, but I didn't seem to be getting any food, either.
I was actually getting kind of hungry, which at that point meant that I was starving, since my appetite had generally been quite poor, but my breakfast never arrived. I assumed this had something to do with having been moved. Maybe my breakfast got delivered to the other room? By lunchtime I figured things would be straightened out, but again was kept waiting. They had been quite prompt with the food delivery; are they just slower on this hallway, or something? The doctors came, asking about my appetite, and they went. I complained I hadn't gotten any food, and they said they'd make sure the order was there to get anything I wanted.
A few hours later I was ready to chew my arm off.
I called the nurse.
"Um, am I supposed to get a lunch? I've been waiting and I'm really hungry."
"Oh, your orders say no food or water due to a test."
"What test?" I had been told no food or water for the untrasound, but that had been done at six o'clock the previous day.
She flipped through the chart, and found it. "Ultrasound," she said. "You need to not have food or water before the test."
When I pointed out that the test had already occurred--"Or is this another one?" I asked sarcastically--she looked a little bit disconcerted and went to go check.
A little bit later, somebody from food service showed up with a tray. Hospital food is not exciting, nor is it particularly appetizing, but I felt myself beginning to drool. Food, glorious food!
I beheld my tray. It consisted of clear broth, apple juice, and a plate of air.
I laughed hysterically. Clear liquid diet! This is just great...so I hit the nurse call light again and told the person who answered that my plate of air really wasn't the lunch I had been hoping for. "Have you been eating?" They wanted to know. "Usually when you're not eating they start you on clear liquids then..."
Yes, yes. I know all that. But I wasn't on a restricted diet. It was only for that one test, could I please have something normal, instead of something imaginary? He went to go ask the nurse if it was ok. I think she was embarrassed, because they agreed to get anything I wanted. My toasted bagel with cream cheese and container of chocolate milk were delicious.
This was not the only time different shifts of the nursing staff had some confusion about changes in my orders; I learned that as a patient, I was going to have to keep on top of things and let them know. My dad and Susan also helped keep a running list of questions to ask the doctors, which helped immensely. It's also good to know that you can question anything, and you do have the right to refuse the bee-sting shots if you just can't stand them any more, or the plate of air if you want something tastier.
To be continued...
They would provide medication based on my answers, which gradually resulted in my taking, in addition to the patch I already had, an increased dosage on the patch, pills for pain (a narcotic and ibuprofen), pills for muscle spasms, muscle relaxing pills, pills for promoting bowel movements, pills for softening stools, pills for stomach health, pills for sleeping, pills for depressions, pills for anxiety, a powder mixed with liquid for--well, they were never able to really clarify what the Nutri-phos is for (I think it might be something like pedialyte)--either an injection of a very powerful opiate or liquid morphine taken orally when I was to be moved, and an incredibly painful shot for preventing blood clots that felt like a bee sting and which I decided might have consisted of concentrated bee venom. After having been immobile for several weeks and on various narcotic products, my digestive system was seriously backed up, which was leading to the abdominal pain and spleen/gallbladder symptoms. So they decided to step up the cleansing of the alimentary canal and also prescribed things intended to flush the colon from every conceivable direction. Yes. You know what I'm talking about. Mercifully by this time I had a private room.
Naturally, I came to dread visits by the attending and his little doctorlets. They were torturing me. Every time they came to visit, I found myself getting nauseous and vomit-y. When my dad and Susan came into town, they took over talking to the doctors when they could (the timing of their visits meant that sometimes they'd miss him and his posse on rounds), and would even leave the room to talk about topics that seemed to turn me green.
I was not in a good way.
When I got moved to my private room, I might have looked forward to getting more individual attention and care from the nursing staff. I now know that this does not necessarily happen.
One of the things the doctors told me is that I needed to drink as much as I could. Take in fluids at all times. Any fluids. Juice, water, milk, anything. I didn't seem to be getting any water, although they did have me on an iv. Also, food is important to get the bowels moving. I needed to keep my digestion working, but I didn't seem to be getting any food, either.
I was actually getting kind of hungry, which at that point meant that I was starving, since my appetite had generally been quite poor, but my breakfast never arrived. I assumed this had something to do with having been moved. Maybe my breakfast got delivered to the other room? By lunchtime I figured things would be straightened out, but again was kept waiting. They had been quite prompt with the food delivery; are they just slower on this hallway, or something? The doctors came, asking about my appetite, and they went. I complained I hadn't gotten any food, and they said they'd make sure the order was there to get anything I wanted.
A few hours later I was ready to chew my arm off.
I called the nurse.
"Um, am I supposed to get a lunch? I've been waiting and I'm really hungry."
"Oh, your orders say no food or water due to a test."
"What test?" I had been told no food or water for the untrasound, but that had been done at six o'clock the previous day.
She flipped through the chart, and found it. "Ultrasound," she said. "You need to not have food or water before the test."
When I pointed out that the test had already occurred--"Or is this another one?" I asked sarcastically--she looked a little bit disconcerted and went to go check.
A little bit later, somebody from food service showed up with a tray. Hospital food is not exciting, nor is it particularly appetizing, but I felt myself beginning to drool. Food, glorious food!
I beheld my tray. It consisted of clear broth, apple juice, and a plate of air.
I laughed hysterically. Clear liquid diet! This is just great...so I hit the nurse call light again and told the person who answered that my plate of air really wasn't the lunch I had been hoping for. "Have you been eating?" They wanted to know. "Usually when you're not eating they start you on clear liquids then..."
Yes, yes. I know all that. But I wasn't on a restricted diet. It was only for that one test, could I please have something normal, instead of something imaginary? He went to go ask the nurse if it was ok. I think she was embarrassed, because they agreed to get anything I wanted. My toasted bagel with cream cheese and container of chocolate milk were delicious.
This was not the only time different shifts of the nursing staff had some confusion about changes in my orders; I learned that as a patient, I was going to have to keep on top of things and let them know. My dad and Susan also helped keep a running list of questions to ask the doctors, which helped immensely. It's also good to know that you can question anything, and you do have the right to refuse the bee-sting shots if you just can't stand them any more, or the plate of air if you want something tastier.
To be continued...
Labels: anxiety, Dad, doctorlets, food, hospital, morphine, nausea, spasms, Susan G. Komen
Saturday, February 04, 2006
Admission: aren't hospitals supposed to make you feel better?
Brian contacted Lita to let her know what was going on and that getting to my radiation appointments was going to be a problem. She wanted to get me admitted to the care of radiation oncology, but to do that I'd need to come through the Emergency Room at U of M since the prospect of doing any normal kind of transportation was out of the question.
The trouble with my Westland apartment is that Westland is smack dab in the middle of Oakwood hospital territory. Local ambulances were going to want to take me somewhere nearby. EMS people who normally deliver to U of M are not going to want to travel all the way to Westland to pick somebody up. After no small amount of calling different EMS companies, Brian found one that was willing to go out of the way.
The EMS people came and discussed how to get me out of the apartment, and ended up getting help from the local fire department. The trick was going to be moving me over onto the body board, which didn't quite fit around the corner from the bedroom to the hallway, so they were going to have to tilt it sideways. (They did a draft run before loading me up.) The other problem was that I was completely unable to scootch myself over from the bed to the board, so they were going to have to manhandle me over. There was some discussion about whether or not to just take the sheets, which caused me to panic unreasonably since I love those sheets, which have a very high thread count. Finally I think they got a sheet of their own and jiggled me on one side then the other (not pleasant), and then moved me on the heave of three, which was awful, I saw stars, and whimpered from the agony.
Agony. It's a word I will probably use a lot. I think it might come across as hyperbole, but I do not exaggerate.
Being tilted sideways was not only painful, but it was frightening as well. I was strapped down fairly well, but couldn't help worrying that I would fall off the board. The EMS people tried fairly hard to keep me level on the stairs, which I appreciated, and when we got outside they were able to move me to a stretcher. It was snowing, and I thought of the poem recited by Joy Gresham in Shadowlands where she talks about soldiers seeing "..with unwounded eye/For once a gentle thing/Fall from the sky."
In the emergency van they hooked me up, loaded me with drugs to keep me from feeling too much during the trip, and took me to Ann Arbor.
I think I was probably in the Emergency area for a long time, but I don't really know. What I remember most is having to go to be X-rayed, where I felt that the technicians wanted to cause me unreasonable pain. In order to get good films of my hip, they tried to do a "through-shot" which involved lifting one leg and trying to take the X-ray under the leg. Brian had to help hold the leg up, since I just couldn't do it. Then they decided that wasn't good enough and insisted I be turned on my side. I insisted they not do it, but I lost out. When they turned me, I actually screamed. I decided X-rays were bad, tests were bad, and I didn't want to ever have any more. Moving to and from the X-ray table and the transport gurney were also bad. It seems to be impossible for four to six people to keep legs and hips and shoulders and everything else lined up while moving a body. To somebody with a broken pelvis, this means that being moved is going to cause hideous pain.
After deciding, "yup, she has a broken pelvis" and "yup, she can't get around without severe assistance" and "yup, her vitals are a bit screwey and need to be watched," I was admitted to the hospital proper. At this point, more tests were warranted since I had abdominal tenderness, and the doctors were concerned I might be in the midst of some kind of spleen/gallbladder issue, so they wanted to send me down for an ultrasound, at which point I began to cry, which hurt my hip.
The nurse was livid, and told me I didn't have to go if I didn't want to. She told the doctors so.
I don't have to go? Cool! So I refused to let them transport me--which I had already decided was evil and unbearably painful, what with being tossed around like a sack of potatoes--for something I wasn't convinced I had.
So the doctors came to me and said the test was vitally important, and they had a portable scanner they could use.
If they had a portable scanner, why couldn't they propose using that on someone who finds moving to be insupportibly agonizing? Grrrrr... Incidentally, when they did bring the portable scanner (which the technicians complained about no end--apparently it doesn't do everything automatically like their shiny new stationary equipment down in the ultrasound area; poor babies), they had another stop on my floor anyway.
Having the test required no food or drink, which led to my next lesson in Life in the Hospital: shift changes can result in some incredible stupidity.
To be continued...
The trouble with my Westland apartment is that Westland is smack dab in the middle of Oakwood hospital territory. Local ambulances were going to want to take me somewhere nearby. EMS people who normally deliver to U of M are not going to want to travel all the way to Westland to pick somebody up. After no small amount of calling different EMS companies, Brian found one that was willing to go out of the way.
The EMS people came and discussed how to get me out of the apartment, and ended up getting help from the local fire department. The trick was going to be moving me over onto the body board, which didn't quite fit around the corner from the bedroom to the hallway, so they were going to have to tilt it sideways. (They did a draft run before loading me up.) The other problem was that I was completely unable to scootch myself over from the bed to the board, so they were going to have to manhandle me over. There was some discussion about whether or not to just take the sheets, which caused me to panic unreasonably since I love those sheets, which have a very high thread count. Finally I think they got a sheet of their own and jiggled me on one side then the other (not pleasant), and then moved me on the heave of three, which was awful, I saw stars, and whimpered from the agony.
Agony. It's a word I will probably use a lot. I think it might come across as hyperbole, but I do not exaggerate.
Being tilted sideways was not only painful, but it was frightening as well. I was strapped down fairly well, but couldn't help worrying that I would fall off the board. The EMS people tried fairly hard to keep me level on the stairs, which I appreciated, and when we got outside they were able to move me to a stretcher. It was snowing, and I thought of the poem recited by Joy Gresham in Shadowlands where she talks about soldiers seeing "..with unwounded eye/For once a gentle thing/Fall from the sky."
In the emergency van they hooked me up, loaded me with drugs to keep me from feeling too much during the trip, and took me to Ann Arbor.
I think I was probably in the Emergency area for a long time, but I don't really know. What I remember most is having to go to be X-rayed, where I felt that the technicians wanted to cause me unreasonable pain. In order to get good films of my hip, they tried to do a "through-shot" which involved lifting one leg and trying to take the X-ray under the leg. Brian had to help hold the leg up, since I just couldn't do it. Then they decided that wasn't good enough and insisted I be turned on my side. I insisted they not do it, but I lost out. When they turned me, I actually screamed. I decided X-rays were bad, tests were bad, and I didn't want to ever have any more. Moving to and from the X-ray table and the transport gurney were also bad. It seems to be impossible for four to six people to keep legs and hips and shoulders and everything else lined up while moving a body. To somebody with a broken pelvis, this means that being moved is going to cause hideous pain.
After deciding, "yup, she has a broken pelvis" and "yup, she can't get around without severe assistance" and "yup, her vitals are a bit screwey and need to be watched," I was admitted to the hospital proper. At this point, more tests were warranted since I had abdominal tenderness, and the doctors were concerned I might be in the midst of some kind of spleen/gallbladder issue, so they wanted to send me down for an ultrasound, at which point I began to cry, which hurt my hip.
The nurse was livid, and told me I didn't have to go if I didn't want to. She told the doctors so.
I don't have to go? Cool! So I refused to let them transport me--which I had already decided was evil and unbearably painful, what with being tossed around like a sack of potatoes--for something I wasn't convinced I had.
So the doctors came to me and said the test was vitally important, and they had a portable scanner they could use.
If they had a portable scanner, why couldn't they propose using that on someone who finds moving to be insupportibly agonizing? Grrrrr... Incidentally, when they did bring the portable scanner (which the technicians complained about no end--apparently it doesn't do everything automatically like their shiny new stationary equipment down in the ultrasound area; poor babies), they had another stop on my floor anyway.
Having the test required no food or drink, which led to my next lesson in Life in the Hospital: shift changes can result in some incredible stupidity.
To be continued...
Labels: Brian, EMS, hip, hospital, Lita, radiation, ultrasound, Westland, x-rays
Tuesday, November 22, 2005
More Questions With No Answers
Will I start to feel better soon?
Will the new pain medication keep from making me ill so that I don't have to worry that the involuntary muscular spasms from heaving the remnants of last night's dinner and this morning's dose of medication into the sink will cause my hip agonizing pain?
Will I give up trying to go up and down the stairs altogether? I thought about cancelling the PET scan today because everything is so hard. I did actually cancel my first appointment for today and sent my mom instead to pick up a new prescription for oxycontin, which gives me something in common with Rush Limbaugh, who also got people to get his drugs for him. Getting down the stairs and into the car was hard. Luckily the hospital has wheelchairs, but they had to move me several times. First they loaded me into a chair in the scanner trailer (sort of like the one I thought was going to take me to Iowa for weird medical testing in some corn field), then they made me get out of the chair and use the little peoples' room (apparently the isotope collects in the bladder and obscures what they are trying to image), then load me onto a narrow table. After they were done, there was an ER nurse to help move me back onto the wheelchair.
I wonder what they saw in the image to go get a nurse.
I wonder how fragile the damaged bits really are. Brian wonders this, too. He said he looked at the ex-rays today but doesn't really know what it means because nobody has explained them.
The reason people shy away from asking things is that they are afraid of the answers. This I understand.
Will the new pain medication keep from making me ill so that I don't have to worry that the involuntary muscular spasms from heaving the remnants of last night's dinner and this morning's dose of medication into the sink will cause my hip agonizing pain?
Will I give up trying to go up and down the stairs altogether? I thought about cancelling the PET scan today because everything is so hard. I did actually cancel my first appointment for today and sent my mom instead to pick up a new prescription for oxycontin, which gives me something in common with Rush Limbaugh, who also got people to get his drugs for him. Getting down the stairs and into the car was hard. Luckily the hospital has wheelchairs, but they had to move me several times. First they loaded me into a chair in the scanner trailer (sort of like the one I thought was going to take me to Iowa for weird medical testing in some corn field), then they made me get out of the chair and use the little peoples' room (apparently the isotope collects in the bladder and obscures what they are trying to image), then load me onto a narrow table. After they were done, there was an ER nurse to help move me back onto the wheelchair.
I wonder what they saw in the image to go get a nurse.
I wonder how fragile the damaged bits really are. Brian wonders this, too. He said he looked at the ex-rays today but doesn't really know what it means because nobody has explained them.
The reason people shy away from asking things is that they are afraid of the answers. This I understand.
Labels: Brian, hip, hospital, PET scan, spasms, stairs, wheelchair, x-rays
Friday, October 28, 2005
What I plan to be for Halloween
For Halloween I plan to be a photon torpedo. I will be arriving at the hospital at 5:00, will be injected with contrast dye, and will be loaded into the torpedo bay where they do MRI scans.
I had an MRI last Wednesday, and the report showed some possible "activity of the L4 and L5; results inconclusive." They recommended a repeat, this time with contrasting dye.
At least this time I will know to park by the West entrance. Last time I was unaware that they wanted me to sign in at the west lobby, so I walked in the main entrance and had to negotiate several very long hallways. Then they made me walk down several more long hallways to get to Radiology. Then the MRI guy came and got me, and led me down a bunch of other corridors, until we ended up in what looked like a loading dock (complete with a hydraulic lift), and a big industrial door which slides up and down and looked like the back of an 18 wheel semi. I swear to god for a moment I thought I was being abducted.
"They're going to load me onto a truck, take me to Iowa, and perform heinous medical experiments!" Yes, I have probably seen too many episodes of X-Files. (When I related this story to a colleague, I had gotten as far as mentioning the loading dock area, when she blurted out, "You're just like Scully! You're going to end up on a rail car with probes sticking out of you!" I'm not the only one.)
November 3 I will be having my second-ever bone scan. This time the radioactive isotope will cause a mutation granting me super powers; I'm certain of it. I deserve to have super powers. I will try to use them for good and not for evil, although I'm really hoping I gain the ability to electrocute people.
I had an MRI last Wednesday, and the report showed some possible "activity of the L4 and L5; results inconclusive." They recommended a repeat, this time with contrasting dye.
At least this time I will know to park by the West entrance. Last time I was unaware that they wanted me to sign in at the west lobby, so I walked in the main entrance and had to negotiate several very long hallways. Then they made me walk down several more long hallways to get to Radiology. Then the MRI guy came and got me, and led me down a bunch of other corridors, until we ended up in what looked like a loading dock (complete with a hydraulic lift), and a big industrial door which slides up and down and looked like the back of an 18 wheel semi. I swear to god for a moment I thought I was being abducted.
"They're going to load me onto a truck, take me to Iowa, and perform heinous medical experiments!" Yes, I have probably seen too many episodes of X-Files. (When I related this story to a colleague, I had gotten as far as mentioning the loading dock area, when she blurted out, "You're just like Scully! You're going to end up on a rail car with probes sticking out of you!" I'm not the only one.)
November 3 I will be having my second-ever bone scan. This time the radioactive isotope will cause a mutation granting me super powers; I'm certain of it. I deserve to have super powers. I will try to use them for good and not for evil, although I'm really hoping I gain the ability to electrocute people.
Labels: bone scan, Halloween, hospital, MRI, star trek, superpowers, X-Files
Wednesday, October 26, 2005
F*CK Insurance: a long, boring rant nobody wants to read
Firstly, I am honestly grateful that I even have health insurance, don't get me wrong. If I didn't have reasonably good health coverage, I would not be able to pay my bills and would probably have ended up moving back in with Mom and Skippy, who, while they love me--and I them, would drive me completely stark raving bonkers within a week.
I was notified in mid-September that the hospital with which my primary care doctor's office was affiliated, has decided to pull out of my insurance plan, which meant that I was going to have to choose a new primary care physician. I was not able to act on matters immediately, what with jury duty, trips, a conference, and generally being overwhelmed at how difficult it is to get things done when walking is so hard. Finally the insurance company indicated I would have to select someone by October 9. Not a problem, I thought. I went to the M-Care website and selected a PCP who is affiliated with the same health system as the doctor I'm seeing for my hip. A wise move, I thought.
My first visit to that office, already described here, was miserable. I ended up getting no help and was instead chastised for not having a health history on file with them. And given another prescription for an arthritis medication. I filled the prescription, then stuck it in one of the medicine cabinets at home where it will sit, unused.
A week later I decided it would be a good idea to get treatment for a nagging urinary tract infection, so I called and requested a same-day appointment. This time I saw a physician's assistant. This time the person examining me seemed interested and concerned about my symptoms. This time (oh how novel) he seemed to be troubled by chest pain in a patient who has a history of breast cancer.
"Do you have bone mets?" he asked.
This is not the question I really wanted to think about. I don't have an answer, and was afraid to even think it. Breast cancer, when it metastasises, often shows up in the bones, causing bone and joint pain.
"When was your last bone scan?" he wanted to know.
My last bone scan was done before my surgery, I think in October 2003. "I've had Xrays," I said. Maybe Xrays are magically good enough.
He gave me a prescription and instructions to call the hospital for a bone scan, which I agreed to do. He also wanted to know if I was going to be seeing an oncologist. At this point I got a little upset, because I had been trying to call this new doctor's office to get a referral to see Dr. Coello, my oncologist.
When you call the main number, you are told to press 2 to speak to the referral coordinator. Well, when you press 2, you don't actually get to speak to the referral coordinator. You hear a recording which says for all new and ongoing referrals, to hang up and dial the main number, then press 5 to leave a message for a physician. So I hung up, dialed the main number, pressed five, and when I tried to explain to the receptionist that I was having trouble getting a referral, she said, "Hold on," and then transferred my call. She transferred me to the referral coordinator's line, where I got to hear the message instructing me to hang up and dial the main number.
Lather, rinse, repeat.
I finally spoke to the receptionist and explained that transferring me wasn't helping, so she said, "Let me take a message and I'll give it to the referral coordinator." I am unconvinced that it went anywhere.
When I described this to the PAC seeing me that day, he got really disgusted and said that sort of thing shouldn't happen. He also told me that I would not be able to get a referral to see the person I have been seeing for the last two years, because Oakwood has oncologists on staff. My choices are:
Friday I went to see Dr. Coello, and when the lady at the front desk asked me for my referral, I completely lost it. I haltingly told her that I had been able to get one, and spent the next ten minutes weeping in their waiting room. They decided to let me see the doctor and wrangle the payment issue later. When I told him about the insurance issue, he was annoyed, but reassured me that his care of me was more or less a technicality now, since the chances of anything have spread are so remote as to be nearly impossible. He then wanted to know about my hip and chest pain, and suggested a "myotherapist" in Southfield who helped him with sciatic pain a few years ago. It really works, he claimed. It isn't covered by insurance, but it will be like a miracle.
Then he concluded that my chest pain was related to arthritis, and prescribed a coritcosterioid. I felt slightly better over the weekend; although the corticosteroid didn't seem to help with my chest, it made walking a little easier.
Monday as I was driving to work, I started having difficulty breathing normally. I can not take deep breaths because of the chest pain. I called and left a message for Dr. Coello. After looking at several alarming websites about potential causes of chest pain and shortness of breath (congenital heart failure, or maybe asthma. Maybe a blood clot. Or maybe severe anxiety), I called the primary care place to come in to see someone again, rather than waiting for the appointment which was scheduled for Tuesday.
I was given an appointment with the doctor I saw the first time I went there. As I was sitting in the waiting room, I noticed that well over half the patients consisted of unwed teen mothers and pregnant fifteen year olds.
The doctor was surprised I was still in pain and insisted it was musculo-skeletal. She listened to my lungs and got irked that I would not take deep breaths. She wanted to know why my paperwork had not been transferred yet, and told me that she couldn't do anything. "I am here only to help those people with sore throats and urinary tract infections and things like that they'd go to the emergency room for."
Silly me. Chest pain and shortness of breath is obviously not an emergency condition.
So I asked what I can do about "musculoskeletal pain" if anti-inflammatories have not helped. "Are you just going to prescribe another arthritis medication that doesn't work?" She came back with a prescription for Tylenol 3 (it does help with my hip, but not so much for the chest pain) and spent the last five minutes of my appointment repeatedly telling me to transfer my paperwork, keep my appointments, and see one of the doctors who is going to be at this facility longer than she will.
"Do you understand? Do you understand me?"
Good god. Don't speak to me like I'm an idiot; I comprehend that you are a patronizing [insert derogatory term here], have no interest in or ability to help me, and coming to this office at all is a complete waste of my time. These people are more concerned about paperwork than in dealing with somebody who has current problems. I understand wanting a health history, but how does the fact that you don't have information about every bladder infection I've ever had keep you from attempting to address what is wrong now?
Yesterday I got a call from Dr. Coello, who is very concerned that the medication he prescribed didn't help.He was surprised that the insurance switch has already happened; nobody told him on Friday. He wants to help me find an oncologist in this area and asked me to read off some names for him. It is important that I get a bone scan.
I am rather freaked out about the specialist being worried.
He is going to send his records to the PAC who prescribed my upcoming bone scan; I'm not sure I'll necessarily be going back there. They're used to dealing with knocked-up teenagers and wheezy old people; I don't want to go there EVER AGAIN.
Tomorrow I will ask the pain dude in Canton if he could recommend any of the people at his facility, or if he's familiar or could ask around about any of the oncologists on my list.
Also, F*CK Oakwood. My other primary care physician's office didn't refuse to give me referrals to out-of-network doctors. That's probably why they're no longer part of my bloody insurance plan.
I was notified in mid-September that the hospital with which my primary care doctor's office was affiliated, has decided to pull out of my insurance plan, which meant that I was going to have to choose a new primary care physician. I was not able to act on matters immediately, what with jury duty, trips, a conference, and generally being overwhelmed at how difficult it is to get things done when walking is so hard. Finally the insurance company indicated I would have to select someone by October 9. Not a problem, I thought. I went to the M-Care website and selected a PCP who is affiliated with the same health system as the doctor I'm seeing for my hip. A wise move, I thought.
My first visit to that office, already described here, was miserable. I ended up getting no help and was instead chastised for not having a health history on file with them. And given another prescription for an arthritis medication. I filled the prescription, then stuck it in one of the medicine cabinets at home where it will sit, unused.
A week later I decided it would be a good idea to get treatment for a nagging urinary tract infection, so I called and requested a same-day appointment. This time I saw a physician's assistant. This time the person examining me seemed interested and concerned about my symptoms. This time (oh how novel) he seemed to be troubled by chest pain in a patient who has a history of breast cancer.
"Do you have bone mets?" he asked.
This is not the question I really wanted to think about. I don't have an answer, and was afraid to even think it. Breast cancer, when it metastasises, often shows up in the bones, causing bone and joint pain.
"When was your last bone scan?" he wanted to know.
My last bone scan was done before my surgery, I think in October 2003. "I've had Xrays," I said. Maybe Xrays are magically good enough.
He gave me a prescription and instructions to call the hospital for a bone scan, which I agreed to do. He also wanted to know if I was going to be seeing an oncologist. At this point I got a little upset, because I had been trying to call this new doctor's office to get a referral to see Dr. Coello, my oncologist.
When you call the main number, you are told to press 2 to speak to the referral coordinator. Well, when you press 2, you don't actually get to speak to the referral coordinator. You hear a recording which says for all new and ongoing referrals, to hang up and dial the main number, then press 5 to leave a message for a physician. So I hung up, dialed the main number, pressed five, and when I tried to explain to the receptionist that I was having trouble getting a referral, she said, "Hold on," and then transferred my call. She transferred me to the referral coordinator's line, where I got to hear the message instructing me to hang up and dial the main number.
Lather, rinse, repeat.
I finally spoke to the receptionist and explained that transferring me wasn't helping, so she said, "Let me take a message and I'll give it to the referral coordinator." I am unconvinced that it went anywhere.
When I described this to the PAC seeing me that day, he got really disgusted and said that sort of thing shouldn't happen. He also told me that I would not be able to get a referral to see the person I have been seeing for the last two years, because Oakwood has oncologists on staff. My choices are:
- find a different PCP who is part of the same network as my current oncologist
- find a totally new oncologist who doesn't know me
- pay exorbitantly to continue seeing someone without authorization; hope that it's not too expensive
Friday I went to see Dr. Coello, and when the lady at the front desk asked me for my referral, I completely lost it. I haltingly told her that I had been able to get one, and spent the next ten minutes weeping in their waiting room. They decided to let me see the doctor and wrangle the payment issue later. When I told him about the insurance issue, he was annoyed, but reassured me that his care of me was more or less a technicality now, since the chances of anything have spread are so remote as to be nearly impossible. He then wanted to know about my hip and chest pain, and suggested a "myotherapist" in Southfield who helped him with sciatic pain a few years ago. It really works, he claimed. It isn't covered by insurance, but it will be like a miracle.
Then he concluded that my chest pain was related to arthritis, and prescribed a coritcosterioid. I felt slightly better over the weekend; although the corticosteroid didn't seem to help with my chest, it made walking a little easier.
Monday as I was driving to work, I started having difficulty breathing normally. I can not take deep breaths because of the chest pain. I called and left a message for Dr. Coello. After looking at several alarming websites about potential causes of chest pain and shortness of breath (congenital heart failure, or maybe asthma. Maybe a blood clot. Or maybe severe anxiety), I called the primary care place to come in to see someone again, rather than waiting for the appointment which was scheduled for Tuesday.
I was given an appointment with the doctor I saw the first time I went there. As I was sitting in the waiting room, I noticed that well over half the patients consisted of unwed teen mothers and pregnant fifteen year olds.
The doctor was surprised I was still in pain and insisted it was musculo-skeletal. She listened to my lungs and got irked that I would not take deep breaths. She wanted to know why my paperwork had not been transferred yet, and told me that she couldn't do anything. "I am here only to help those people with sore throats and urinary tract infections and things like that they'd go to the emergency room for."
Silly me. Chest pain and shortness of breath is obviously not an emergency condition.
So I asked what I can do about "musculoskeletal pain" if anti-inflammatories have not helped. "Are you just going to prescribe another arthritis medication that doesn't work?" She came back with a prescription for Tylenol 3 (it does help with my hip, but not so much for the chest pain) and spent the last five minutes of my appointment repeatedly telling me to transfer my paperwork, keep my appointments, and see one of the doctors who is going to be at this facility longer than she will.
"Do you understand? Do you understand me?"
Good god. Don't speak to me like I'm an idiot; I comprehend that you are a patronizing [insert derogatory term here], have no interest in or ability to help me, and coming to this office at all is a complete waste of my time. These people are more concerned about paperwork than in dealing with somebody who has current problems. I understand wanting a health history, but how does the fact that you don't have information about every bladder infection I've ever had keep you from attempting to address what is wrong now?
Yesterday I got a call from Dr. Coello, who is very concerned that the medication he prescribed didn't help.He was surprised that the insurance switch has already happened; nobody told him on Friday. He wants to help me find an oncologist in this area and asked me to read off some names for him. It is important that I get a bone scan.
I am rather freaked out about the specialist being worried.
He is going to send his records to the PAC who prescribed my upcoming bone scan; I'm not sure I'll necessarily be going back there. They're used to dealing with knocked-up teenagers and wheezy old people; I don't want to go there EVER AGAIN.
Tomorrow I will ask the pain dude in Canton if he could recommend any of the people at his facility, or if he's familiar or could ask around about any of the oncologists on my list.
Also, F*CK Oakwood. My other primary care physician's office didn't refuse to give me referrals to out-of-network doctors. That's probably why they're no longer part of my bloody insurance plan.
Labels: Bon Secours, bone scan, conference, Dr. Coello, hip, hospital, insurance, jury duty, M-Care, metastasis, Oakwood, referrals, x-rays
