Friday, October 26, 2007
Feelin' Footloose and Fancy Free
Since switching from Abraxane to Adriamycin, I have had more energy. Sure, the digestive issues have been bad, but eliminating one of the anti-nausea medications helped (we replaced the intravenous Aloxi with Zofran pills that can be taken as-needed) and I think I have it under control.
I walk faster. I noticed it the other day when I was heading down the back hallway at work. For months I've been sort of shambling around like one of the extras in Shaun of the Dead--and now I'm almost walking normally. I tilt to the side because my legs are different lengths, but concentrating a little keeps me from bumping into walls.
I have grocery shopped and cooked meals. Brian is amazed. Shrimp boil and crabcakes. Stuffed peppers. Black bean soup. Chicken or bean enchiladas. I'm actually planning to make risotto this weekend, so help me.
It doesn't stop there: I've been hanging pictures on the walls, assembling electronics, clearing clutter, sorting mail, straightening bathrooms, and catching up on some reading. I've been very talkative and have not felt the need to go to sleep early. What is with this crazy activity level? Is this how I was when I was "normal"?
I feel great.
I sure hope the new chemotherapy drug is actually working. It would suck to feel so terrific only to have to switch immediately to something else.
I walk faster. I noticed it the other day when I was heading down the back hallway at work. For months I've been sort of shambling around like one of the extras in Shaun of the Dead--and now I'm almost walking normally. I tilt to the side because my legs are different lengths, but concentrating a little keeps me from bumping into walls.
I have grocery shopped and cooked meals. Brian is amazed. Shrimp boil and crabcakes. Stuffed peppers. Black bean soup. Chicken or bean enchiladas. I'm actually planning to make risotto this weekend, so help me.
It doesn't stop there: I've been hanging pictures on the walls, assembling electronics, clearing clutter, sorting mail, straightening bathrooms, and catching up on some reading. I've been very talkative and have not felt the need to go to sleep early. What is with this crazy activity level? Is this how I was when I was "normal"?
I feel great.
I sure hope the new chemotherapy drug is actually working. It would suck to feel so terrific only to have to switch immediately to something else.
Labels: Abraxane, Adriamycin, Brian, chemo
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
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
Tuesday, June 26, 2007
Why I'm Scared of My Pockets
(Feel free to click the image for a close-up. It's icky.)Do you keep things in your pockets? Keys? Spare change? An empty gum wrapper? Your work ID card?
What if, when you went to reach in to your pocket to retrieve something, your fingernails didn't come out with your hand? The photo to the left illustrates a potential side-effect of Abraxane. The part of the nail below the green-black portion is the part that is still attached to my finger; all but my pinky on my right hand--and so far three of the nails on my left--have lifted off the nail bed. It's uncomfortable and troubling.
At my last doctor's appointment, I was hoping for advice that would help. Could I use nail glue to glue them down? What about stuff that might get stuck under there? Will they detach completely, or will the lifted parts grow out? Lita didn't know for sure. They might fall off completely. She did say that nails that lift from chemo treatments tend to not get nail infections, and if they smell weird, to use epsom salts. Dr. Hayes helpfully suggested, "wear nail polish."
Great.
My fingertips are sore. Typing is irritating and I can't open things very easily. Baxter has no idea that grabbing my hand with his little teeth might result in an unfortunate snack.
Finally, some non-icky photos:
Nyyyyyyeeeeeeeeeerrrrrrm [airplane noise]! (April)
I'm a good boy. (May)
I can touch the tip of my nose with my tongue. Check out my new big-boy harness and my Harley-Davidson tag. (June)
Hi. I'm getting so big! (June)Labels: Abraxane, Baxter, chemo, Dr. Hayes, Lita, nails
Monday, April 30, 2007
The Latest Irritant
How often do you use your fingernails, and what are they used for?
Do you scratch your nose? Open your can of soda? Put on a necklace? Fasten a puppy's leash? Open a box of cereal? Take cellophane off of your new dvd?
For some reason I've got pain in my most-used fingertips (and my big left toe as well as both pinky toes). My index fingers are both tender, my right thumb is quite sore, my left thumb is a little bit sore, and it's starting in the middle fingers of both hands. A few of the nails actually show red marks in the middle; I don't know if the pain will go away when the red marks grow out or not. It hurts to press anything too hard with my fingertips, and using my fingernails is almost out of the question. Typing is a little uncomfortable, but still do-able. Other tasks are...getting difficult.
This could be neuropathy, a possible side effect of many chemo regimens. I do not have any tingling, though, just pain. If it is a side effect of my medications, I wonder what to do about it. Will I switch medications? (And here I was all happy about continuing on Abraxane.) Is there something I could take for the fingertip pain? If I switch to something else, is it reversible? Will it just go away on its own?
It's weird and irritating.
Do you scratch your nose? Open your can of soda? Put on a necklace? Fasten a puppy's leash? Open a box of cereal? Take cellophane off of your new dvd?
For some reason I've got pain in my most-used fingertips (and my big left toe as well as both pinky toes). My index fingers are both tender, my right thumb is quite sore, my left thumb is a little bit sore, and it's starting in the middle fingers of both hands. A few of the nails actually show red marks in the middle; I don't know if the pain will go away when the red marks grow out or not. It hurts to press anything too hard with my fingertips, and using my fingernails is almost out of the question. Typing is a little uncomfortable, but still do-able. Other tasks are...getting difficult.
This could be neuropathy, a possible side effect of many chemo regimens. I do not have any tingling, though, just pain. If it is a side effect of my medications, I wonder what to do about it. Will I switch medications? (And here I was all happy about continuing on Abraxane.) Is there something I could take for the fingertip pain? If I switch to something else, is it reversible? Will it just go away on its own?
It's weird and irritating.
Labels: Abraxane, chemo, fingernails, neuropathy
Saturday, April 21, 2007
I should probably also mention...
My CT scan results came back showing improvement. Since there was still some concern about why my liver counts were off, I had to wait until the blood test results were back on Tuesday before going to the infusion area.
It took hours.
It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.
Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.
Anyway, the numbers came down so I went to go be infused as normal.
I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.
It took hours.
It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.
Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.
Anyway, the numbers came down so I went to go be infused as normal.
I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.
Labels: Abraxane, blood tests, braces, chemo, CT scan, Decadron, dermatologist, Dr. Hayes, infusion, Lita, liver
Wednesday, March 28, 2007
Steroids may be the culprit
I had an appointment with the dermatologist (one of the dermatologists who is interested in how cancer treatments can affect the skin) on Tuesday, and she was puzzled because my symptoms are not typical of the cancer drugs she has looked at. Some of the chemotherapy drugs can cause acne, but I am not on one that tends to have that effect. Avastin can cause a skin rash, but it tends to present on the hands and does not resemble acne.
When I commented that I have been on Avastin consistently and the rash did not start until after resuming Abraxane, she wanted to know if they were giving me any other medications with it. "Yes," I told her. "They give me decadron."
Decadron is a steroid designed to combat the chemo side effects. In addition to making me not puke, it also makes me consume Lucky Charms like there is no tomorrow.
She suggested that she could do a biopsy of my skin to see if it looks like other cases she has seen of the skin being affected by chemo drugs, but in light of what I told her, she instructed me to ask if I had been getting Decadron while on Avastin alone (I don't think so, but I can't recall for sure) and gave me some prescriptions for a couple of goops to try. One is a topical antibiotic to be used daily and the other is a cousin of Retin-A to be used every other day. They may cause drying of the skin, but anything is better than the incessant redness, pain, itching, and daily crop of new whiteheads.
It just occurs to me that both the bottle and the tube may be larger than four ounces, so I wonder if the airline will let me take them on board an airplane when I travel. I am going to a conference in May.
When I commented that I have been on Avastin consistently and the rash did not start until after resuming Abraxane, she wanted to know if they were giving me any other medications with it. "Yes," I told her. "They give me decadron."
Decadron is a steroid designed to combat the chemo side effects. In addition to making me not puke, it also makes me consume Lucky Charms like there is no tomorrow.
She suggested that she could do a biopsy of my skin to see if it looks like other cases she has seen of the skin being affected by chemo drugs, but in light of what I told her, she instructed me to ask if I had been getting Decadron while on Avastin alone (I don't think so, but I can't recall for sure) and gave me some prescriptions for a couple of goops to try. One is a topical antibiotic to be used daily and the other is a cousin of Retin-A to be used every other day. They may cause drying of the skin, but anything is better than the incessant redness, pain, itching, and daily crop of new whiteheads.
It just occurs to me that both the bottle and the tube may be larger than four ounces, so I wonder if the airline will let me take them on board an airplane when I travel. I am going to a conference in May.
Labels: Abraxane, acne, Avastin, Decadron, dermatologist
Monday, March 19, 2007
Insult to Injury: or, who is that alien in the mirror?
If it's not bad enough to be bloated and mostly bald, with eyebrows that are jumping ship even as I type, now I am dealing with an issue I really haven't had to consider for a while.
I laugh when I see those moisturizer commercials which promise you can have skin that looks "ten years younger." I currently have the skin of a fifteen-year old. I have acne all over my face, head, and neck. It's around my ears, blanketing my forehead, dripping down my cheeks. The bumps are mostly small, at least, but there are more of them than I remember ever seeing before. I never had acne like this even when I WAS fifteen, and I by no means had clear skin.
In fact, I had acne well into my twenties but it had finally gone away. I was happy to have clear skin; I felt I deserved it after years of misery and over-the-counter treatments.
Dr. Hayes seems to think it is a reaction to the Avastin. I dunno. It started after resuming Abraxane; I don't know why adding back Abraxane would make the Avastin suddenly produce this effect. My head itches constantly, and most of the bumps are mildly painful. Acne products do no good, they just make my skin more red and peely. I have given up wearing my red wig because placing red hair on top of a red face looks awful. I have (mostly) given up wearing my brown wig because wearing stuff on my head is itchy and uncomfortable. I'm wearing hats to work, but they are hot, itchy, and uncomfortable. I don't leave the house on weekends because it's too much effort to try to cover the blotches, paint eyebrows, ring my eyes with liner so that I look like I have actual eyeballs and not currants sunk into my red, lumpy head.
I wanted to call in "ugly" to work today.
Next Tuesday I will be seeing a dermatologist for the first time, who will probably go, "hmmmm. You have a rash." I wonder if he or she will have the miracle cure.
I laugh when I see those moisturizer commercials which promise you can have skin that looks "ten years younger." I currently have the skin of a fifteen-year old. I have acne all over my face, head, and neck. It's around my ears, blanketing my forehead, dripping down my cheeks. The bumps are mostly small, at least, but there are more of them than I remember ever seeing before. I never had acne like this even when I WAS fifteen, and I by no means had clear skin.
In fact, I had acne well into my twenties but it had finally gone away. I was happy to have clear skin; I felt I deserved it after years of misery and over-the-counter treatments.
Dr. Hayes seems to think it is a reaction to the Avastin. I dunno. It started after resuming Abraxane; I don't know why adding back Abraxane would make the Avastin suddenly produce this effect. My head itches constantly, and most of the bumps are mildly painful. Acne products do no good, they just make my skin more red and peely. I have given up wearing my red wig because placing red hair on top of a red face looks awful. I have (mostly) given up wearing my brown wig because wearing stuff on my head is itchy and uncomfortable. I'm wearing hats to work, but they are hot, itchy, and uncomfortable. I don't leave the house on weekends because it's too much effort to try to cover the blotches, paint eyebrows, ring my eyes with liner so that I look like I have actual eyeballs and not currants sunk into my red, lumpy head.
I wanted to call in "ugly" to work today.
Next Tuesday I will be seeing a dermatologist for the first time, who will probably go, "hmmmm. You have a rash." I wonder if he or she will have the miracle cure.
Labels: Abraxane, acne, Avastin, baldness, Dr. Hayes, eyebrows, hair
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
Thursday, January 04, 2007
So Long, Reappearing Eyebrows
Brian got worried while processing nursing and oncology journals at work, and contacted Lita, who left a message for me to call her back.
My blood tests may warrant new scans after all.
I am seriously considering begging for some alternative to the CT scan, which involves drinking copious amounts of barium, a substance which is also famous for being used to give people enemas. It's nasty. The last time I got so icked out over the prospect of drinking it that I yakked into the waste basket in the doctor's office waiting area. I love it not.
Brian seemed to think Lita will want me to have scans before my next appointment in two weeks. On the one hand, I think one might as well be prompt about treating problems. On the other hand, I wish I didn't know about any of this and could spend the next two weeks feeling brazenly optimistic before the deflating: your break may be over.
I don't even know what she's going to say, but I imagine my tumor markers are creeping up and the wonky liver results are "of concern." Then the scans will show increased tumor activity and there will be some head-scratching over whether or not this is resumed activity or whether things had started to progress while I was still taking Abraxane.
I would imagine the next step is to try Abraxane again to see if it continues to beat back the invasion. If not, we switch to another therapy and hope it lasts long enough for science to come up with new alternatives when the current one fails. Luckily I still have several choices.
I wonder if the follicles on my scalp will again go nuts and begin flinging hair onto my shoulders and pillowcase. I wonder if my eyebrows will fall out again. I have five o'clock shadow at the inner corners and actually tweezed the other day. I will be sad to see those hard-earned hairs go.
My blood tests may warrant new scans after all.
I am seriously considering begging for some alternative to the CT scan, which involves drinking copious amounts of barium, a substance which is also famous for being used to give people enemas. It's nasty. The last time I got so icked out over the prospect of drinking it that I yakked into the waste basket in the doctor's office waiting area. I love it not.
Brian seemed to think Lita will want me to have scans before my next appointment in two weeks. On the one hand, I think one might as well be prompt about treating problems. On the other hand, I wish I didn't know about any of this and could spend the next two weeks feeling brazenly optimistic before the deflating: your break may be over.
I don't even know what she's going to say, but I imagine my tumor markers are creeping up and the wonky liver results are "of concern." Then the scans will show increased tumor activity and there will be some head-scratching over whether or not this is resumed activity or whether things had started to progress while I was still taking Abraxane.
I would imagine the next step is to try Abraxane again to see if it continues to beat back the invasion. If not, we switch to another therapy and hope it lasts long enough for science to come up with new alternatives when the current one fails. Luckily I still have several choices.
I wonder if the follicles on my scalp will again go nuts and begin flinging hair onto my shoulders and pillowcase. I wonder if my eyebrows will fall out again. I have five o'clock shadow at the inner corners and actually tweezed the other day. I will be sad to see those hard-earned hairs go.
Labels: Abraxane, baldness, barium, blood tests, bone scan, Brian, CT scan, eyebrows, hair, Lita, nausea
Tuesday, November 21, 2006
Holiday!
Today I started my holiday from Abraxane. I will continue with Zometa and Avastin, but the idea is that I'm currently doing so well that taking a break from chemo will do no harm. This will also enable everybody to see if just the Zometa and Avastin combination will keep things at bay.
If not (I am monitored with blood tests, and Dr. Hayes will order scans if warranted), I will obviously continue with Abraxane. However, eventually I will develop tingling and numbness in my extremities, and the drug may stop working for me. At which point there are other drugs to choose from, but I'm not sad about delaying the inevitable.
I'm also not sad to not spend the later part of this week--the Thanksgiving Holiday--feeling icky and like I have the flu. Woohoo!
I am a little bit sad that my braces were adjusted yesterday. I feel the pain. I hope my teef recover by Thursday.
If not (I am monitored with blood tests, and Dr. Hayes will order scans if warranted), I will obviously continue with Abraxane. However, eventually I will develop tingling and numbness in my extremities, and the drug may stop working for me. At which point there are other drugs to choose from, but I'm not sad about delaying the inevitable.
I'm also not sad to not spend the later part of this week--the Thanksgiving Holiday--feeling icky and like I have the flu. Woohoo!
I am a little bit sad that my braces were adjusted yesterday. I feel the pain. I hope my teef recover by Thursday.
Labels: Abraxane, Avastin, braces, chemo, Dr. Hayes, Zometa
Friday, September 22, 2006
Woohoo! I'm a Case Study! and Crap...I Hate Human Resources...
At my appointment this past Wednesday, Lita (my oncologist's nurse practitioner) told me that she had spoken at a conference in Chicago, where she mentioned me as an example of how well newer cancer treatments can work. I'm a case study!
Of course my name was not used, to protect my identity.
Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.
What a very sad sack I was.
Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.
Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)
Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.
However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.
I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.
I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.
I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.
This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.
Grounds for dispute under the Americans with Disabilities Act? I don't know.
Of course my name was not used, to protect my identity.
Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.
What a very sad sack I was.
Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.
Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)
Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.
However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.
I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.
I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.
I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.
This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.
Grounds for dispute under the Americans with Disabilities Act? I don't know.
Labels: Abraxane, Aunt Barb, Avastin, Brian, chemo, Cleveland, doctorlets, Dr. Hayes, Grandma, hip, Lita, liver, morphine, nausea, Neupogen, physical therapy, radiation, sick days, Zometa
Saturday, June 03, 2006
Alopecia
This is a possible side effect of many chemo drugs, including taxol, of which I received two doses, and abraxane, its non-tree-derived replacement which I received this week. I have hair coming out in tufts.
I can run my fingers through my hair and pull out a prodigious amount, and the brush pulls out an alarming amount at once. Should I stop brushing my hair? Should I cut it and watch as the shorter strands snowfall around my head and shoulders? Should I shave it all now? Should I pretend nothing is amiss?
What to do, what to do...
I can run my fingers through my hair and pull out a prodigious amount, and the brush pulls out an alarming amount at once. Should I stop brushing my hair? Should I cut it and watch as the shorter strands snowfall around my head and shoulders? Should I shave it all now? Should I pretend nothing is amiss?
What to do, what to do...
Labels: Abraxane, baldness, chemo, hair, Taxol
Friday, June 02, 2006
No More Fun with Anaphylaxis
My new chemo drug did not cause me to turn into a red, wheezing beet. I did not have trouble sucking air into my passageways, and the whole thing only took an hour. It was 1/2 hour for the infusion and then 1/2 hour to clear the line and get things in order. The premeds were in pill form, so those took pretty much no time at all.
Of course, I can't be sure that I won't go into anaphylactic shock the next time I receive this drug--maybe I'm building up antibodies and my system will go nuts the next time it encounters this alien substance--but I doubt it. This drug is delivered in a base of albumen, and I have never had a sensitivity to eggs that I know of. The nurses all remembered me from the other day. I also got a visit from Lita, who said, "Here's our problem child!" I was very popular.
I guess for now no more hugging or snorting trees. Oh well.
Of course, I can't be sure that I won't go into anaphylactic shock the next time I receive this drug--maybe I'm building up antibodies and my system will go nuts the next time it encounters this alien substance--but I doubt it. This drug is delivered in a base of albumen, and I have never had a sensitivity to eggs that I know of. The nurses all remembered me from the other day. I also got a visit from Lita, who said, "Here's our problem child!" I was very popular.
I guess for now no more hugging or snorting trees. Oh well.
Labels: Abraxane, chemo, infusion, Lita
