Tuesday, June 17, 2008
Xeloda a Bust: now we try Gemzar
My appointments today ran rather longer than expected. The nutritionist gave me lots of sample protein supplement drinks and mixes, gave me a folder filled with nutrition information, suggested small, multiple meals per day (I think I'm going to have to make myself a schedule) and told me exactly how many calories and how much protein I should be getting to not lose any more weight.
It's a lot more than I expected.
She also gave me advice about dealing with the horrible taste in my mouth. Lemon things seem to be pretty good.
Of course, with the change in chemos, I might not have the same appetite problems, although I do see "loss of appetite" on the list of Gemzar side-effects. I shall try not to psych myself into having the side-effects that are listed. Brian is at the grocery store and asked me about whether I'd want ingredients to make one of the smoothies. I do not want smoothies...I wish I did; it would be fairly easy to put them together. Oh well.
I got very nervous when Dr. Hayes mentioned that 5% of people taking Gemzar develop pneumonia. How lucky am I feeling now?
Also, tomorrow I am to have an ultrasound, and if there is a pocket of liquid in my belly, they'll stick a big ol' giant needle into me, push in a plastic "straw" and let the fluid drain out like I'm a maple tree. Later this month I'm having a brain MRI to get a new "baseline" and check up on how my noggin is doing.
Busy month!
It's a lot more than I expected.
She also gave me advice about dealing with the horrible taste in my mouth. Lemon things seem to be pretty good.
Of course, with the change in chemos, I might not have the same appetite problems, although I do see "loss of appetite" on the list of Gemzar side-effects. I shall try not to psych myself into having the side-effects that are listed. Brian is at the grocery store and asked me about whether I'd want ingredients to make one of the smoothies. I do not want smoothies...I wish I did; it would be fairly easy to put them together. Oh well.
I got very nervous when Dr. Hayes mentioned that 5% of people taking Gemzar develop pneumonia. How lucky am I feeling now?
Also, tomorrow I am to have an ultrasound, and if there is a pocket of liquid in my belly, they'll stick a big ol' giant needle into me, push in a plastic "straw" and let the fluid drain out like I'm a maple tree. Later this month I'm having a brain MRI to get a new "baseline" and check up on how my noggin is doing.
Busy month!
Labels: brain scan, Brian, Dr. Hayes, Gemzar, MRI, nutritionist, ultrasound, Xeloda
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, April 08, 2008
Treatments
My treatment is being resumed, starting tomorrow.
Xeloda it is. I had a minor meltdown in the exam room today at my appointment but after going through one of those mini-boxes of useless half-size tissues, I got the reasonably good news that my liver hasn't yet imploded and that I can begin doing the pills without having to also do an infusion of Gemzar at the same time.
I have the informational packets, I have the pills, I have another am/pm pill case thing to add to my array of am/pm/middle-of-the-day pill cases, and I am ready to go.
I am so relieved.
After that my Mom took me to the new JC Penney in Canton where I did retail therapy. I got some Urban Decay eye primer and draperies! The living room will have some color soon and I ordered thermals plus got some stuff for Brian's office. It remains to be seen how much energy I will have for putting the stuff up. I still have to put the valance up in the guest room and haven't gotten around to it yet.
Brian finds my obsession with the curtains bizarre, I'm sure, but window treatments are important.
Xeloda it is. I had a minor meltdown in the exam room today at my appointment but after going through one of those mini-boxes of useless half-size tissues, I got the reasonably good news that my liver hasn't yet imploded and that I can begin doing the pills without having to also do an infusion of Gemzar at the same time.
I have the informational packets, I have the pills, I have another am/pm pill case thing to add to my array of am/pm/middle-of-the-day pill cases, and I am ready to go.
I am so relieved.
After that my Mom took me to the new JC Penney in Canton where I did retail therapy. I got some Urban Decay eye primer and draperies! The living room will have some color soon and I ordered thermals plus got some stuff for Brian's office. It remains to be seen how much energy I will have for putting the stuff up. I still have to put the valance up in the guest room and haven't gotten around to it yet.
Brian finds my obsession with the curtains bizarre, I'm sure, but window treatments are important.
Labels: Brian, Gemzar, liver, mom, Xeloda
Thursday, March 20, 2008
Hi-Ho, Hi-Ho, It's Off to Work I G---what? What NOW?
I went back to work Monday, March 10 and was happy as a clam to not only be out of the house, but to once again be useful to society. Unfortunately, by the evening my neck/chest/shoulder area began to burn and itch so badly that I cried at my appointment the next day. So I didn't have infusion--they can't treat me with chemo until the skin condition clears up; instead, I went back to the dermatologist to get more of the giant blue horse pills, many boxes of lidoderm patches, and a medication called lyrica (used to control seizures, treat nerve pain and fibromyalgia). From there, I was referred to the pain center to see about getting something called a "nerve block."
Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.
The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.
I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.
Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."
I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.
I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.
I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.
I should be grateful the skin on my puffy moon-face looks great.
The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.
The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.
I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.
So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.
Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.
The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.
I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.
Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."
I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.
I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.
I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.
I should be grateful the skin on my puffy moon-face looks great.
The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.
The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.
I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.
So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.
Labels: acne, Adriamycin, CT scan, Dr. Hayes, Dr. Sachs, Gemzar, Lita, liver, lyrica, pamelor, shingles, spleen, ultram, Xeloda
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, August 30, 2007
Waiting
My scans before I left to go on vacation were inconclusive. My tumor markers had blipped up, my liver functions had blipped up, the scans showed possible new activity in the thoracic spine and possibly the dome of the liver, but Dr. Hayes' advice was to wait and see how the next round of blood tests went, since my numbers have blipped up in the past only to blip back down again.
This week the lab screwed up and didn't take all the appropriate vials of blood, so I had to drive to the hospital early this morning to get poked so that Lita can call me with the tumor counts and liver enzyme numbers.
It may be that I am coming to the end of my relationship with Abraxane. If my numbers keep going up, I will get to go through the scans again before next month's appointment with Dr. Hayes.
There are other drugs I might try instead, like Xeloda or Navelbine. I've been on Abraxane for approximately a year, which Dr. Hayes says is about to be expected. If the chemo drugs are only going to be effective for a year, I sure hope they keep crankin' new ones out.
This week the lab screwed up and didn't take all the appropriate vials of blood, so I had to drive to the hospital early this morning to get poked so that Lita can call me with the tumor counts and liver enzyme numbers.
It may be that I am coming to the end of my relationship with Abraxane. If my numbers keep going up, I will get to go through the scans again before next month's appointment with Dr. Hayes.
There are other drugs I might try instead, like Xeloda or Navelbine. I've been on Abraxane for approximately a year, which Dr. Hayes says is about to be expected. If the chemo drugs are only going to be effective for a year, I sure hope they keep crankin' new ones out.
Labels: Abraxane, bone scan, CT scan, Dr. Hayes, Lita, liver, Navelbine, tumor marker, Xeloda
