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
Tuesday, August 07, 2007
Waiting with Bated Breath?
Just in case anyone is hyperventilating on the edge of his or her seat waiting to hear the results of my scans: nothing is significantly different. According to the reports, there may be "new areas of uptake" on the upper thoracic spine, and the "dome of the liver" might show a difference, but Lita showed me side-by-side comparisons with the scans from three months ago, and it was really hard to see any difference. There are so many blobs in my liver, the possible increase in size of one hardly makes a difference. Dr. Hayes suggested sitting tight for now, rescanning in a few months, and then making a decision whether to continue with Abraxane.
He said being ill from other things--like a horrible butt issue--might cause a false positive. I'm not sure I'm convinced that my fissure could somehow impact a bone scan, but whatever.
Also, Lita and Dr. Hayes decided they wanted to look at my butt to laugh and point, I'm sure. I had to curl up sideways on the exam table and I said, "This is the most undignified thing ever." They said they would ask a surgeon they both trust about whether I was on a suitable antibiotic and that I'd skip chemo that week (this was last Tuesday), and then skip the Avastin today and just go with the Abraxane and Zometa. (The nurse was confused and brought out a Neupogen shot, which we never do the day of chemo--to be honest, we hardly do it at all, although that needs to change since I'm sure the reason I was so sick this past year is because I kept weaseling out of having Brian give me the shots--she felt bad because each shot costs $3,000; luckily somebody else in the infusion area wanted it so it didn't go to waste.)
I am happy to report that my butt is feeling much better now, so I am also able to sit on the edge of my seat.
He said being ill from other things--like a horrible butt issue--might cause a false positive. I'm not sure I'm convinced that my fissure could somehow impact a bone scan, but whatever.
Also, Lita and Dr. Hayes decided they wanted to look at my butt to laugh and point, I'm sure. I had to curl up sideways on the exam table and I said, "This is the most undignified thing ever." They said they would ask a surgeon they both trust about whether I was on a suitable antibiotic and that I'd skip chemo that week (this was last Tuesday), and then skip the Avastin today and just go with the Abraxane and Zometa. (The nurse was confused and brought out a Neupogen shot, which we never do the day of chemo--to be honest, we hardly do it at all, although that needs to change since I'm sure the reason I was so sick this past year is because I kept weaseling out of having Brian give me the shots--she felt bad because each shot costs $3,000; luckily somebody else in the infusion area wanted it so it didn't go to waste.)
I am happy to report that my butt is feeling much better now, so I am also able to sit on the edge of my seat.
Labels: Abraxane, Avastin, bone scan, Brian, chemo, CT scan, Dr. Hayes, fissure, infusion, Lita, Neupogen
Sunday, July 29, 2007
Impending Scan Results
I got so excited by the Posterior Crisis that I forgot to dwell on my CT scans and the joy and delight that is the barium preparation. I don't know why UM Hospital doesn't use the powder that can be mixed with clear liquids. I've been advised by other people to ask for it; I may try to bargain the next time scans are due.
Bargain? Who am I kidding? I will try to beg and wheedle. And cajole. And whine. And plead.
Anyway, I do not have the results of the scans pertaining to my more serious medical issue, although I do know that the CT scan of the pelvis did not show a horrible problem of the rear endal area.
I have an appointment scheduled for Tuesday morning with Dr. Hayes, which I am absolutely NOT going to be able to make. I have hired a consultant from our library's automation system vendor to come to our library to help look at system codes and database setup things. I have been working towards this for a very long time and feel that I absolutely HAVE to be there.
Am I being ridiculous? Isn't my health more important?
I submit that my sanity is equally important to my physical health. Last year I was ill and depressed and really didn't start to feel "normal" until I went back to work. I've been sidelined in the last several months with stupid immuno-compromised illnesses and now my issue of the area upon which I sit, and want to put it all behind me (pardon). I want work to be normal. I want work to not just be normal, but to be effective. What difference will it make if I have to wait a few days or a week to get scan results? I'll have to deal with the results anyway.
This visit is a two-day thing that will not be repeated any time soon. If I miss it, there's no way to wait two days and do it then, instead. I can't reschedule the consultant's trip. I can't fail to show up one day and expect to have people take my opinions seriously.
I don't have TIME for this cancer crap right now.
Bargain? Who am I kidding? I will try to beg and wheedle. And cajole. And whine. And plead.
Anyway, I do not have the results of the scans pertaining to my more serious medical issue, although I do know that the CT scan of the pelvis did not show a horrible problem of the rear endal area.
I have an appointment scheduled for Tuesday morning with Dr. Hayes, which I am absolutely NOT going to be able to make. I have hired a consultant from our library's automation system vendor to come to our library to help look at system codes and database setup things. I have been working towards this for a very long time and feel that I absolutely HAVE to be there.
Am I being ridiculous? Isn't my health more important?
I submit that my sanity is equally important to my physical health. Last year I was ill and depressed and really didn't start to feel "normal" until I went back to work. I've been sidelined in the last several months with stupid immuno-compromised illnesses and now my issue of the area upon which I sit, and want to put it all behind me (pardon). I want work to be normal. I want work to not just be normal, but to be effective. What difference will it make if I have to wait a few days or a week to get scan results? I'll have to deal with the results anyway.
This visit is a two-day thing that will not be repeated any time soon. If I miss it, there's no way to wait two days and do it then, instead. I can't reschedule the consultant's trip. I can't fail to show up one day and expect to have people take my opinions seriously.
I don't have TIME for this cancer crap right now.
Labels: barium, bone scan, CT scan, Dr. Hayes, fissure, library
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
