Tuesday, November 06, 2007
Groovy, Man.
We had a visit with Lita today. Dr. Hayes is often traveling, accepting awards and presenting papers and what not, so I don't actually see him that frequently. It's the price to be paid for having a rock-star oncologist (and by that I mean a very renowned expert in the field of breast cancer), but Lita can handle things just fine.
I'm feeling great, aside from a few residual digestive issues, which may be lingering aftereffects from the Avastin, so I should be mindful but not paranoid. I have no pain anywhere, which is pretty astonishing in light of where I was two years ago.
The EKG I had recently showed that my heart is better than normal. Even if I were to suffer some loss of function from the Adriamycin, it would do just fine. There is a lifetime limit on Adriamycin because it does cause heart damage, but according to Lita, if it does well and keeps me stable, it may be possible to take "heart protecting" drugs to be able to prolong its use.
She also said that I was looking great, and wanted to know what was different. Had I done my eyebrows differently, or something? I said that I've been wearing the blonde wig a lot, and today's was brown. I didn't mention (although this could also be a factor) that I've lost about ten pounds and am nearly in the weight range that was "normal" for me--without having to exert special effort--when I was healthy. I dunno. I just FEEL better. I've been chipper and snarky (to Brian's chagrin, no doubt).
We walked in the door today after coming home from infusion just in time to answer Lita's phone call: she had my lab results which weren't available at the appointment. My CA15.something-or-other test shows that my tumor markers have dropped about forty points. The CEA test (also for tumor markers) blipped up a little bit, but it is Lita's opinion that the CA15 is more specific to breast cancer and therefore more important. I'm pretty happy with that. She also said my liver function was "much improved," which is pretty groovy.
November 5 was the four-year anniversary of my mastectomy. October 30 was the two-year anniversary of being diagnosed with metastatic disease. This could be a depressing time of year if I wasn't feeling so terrific. I got good news, I got my energy back. I'm bald and gimpy, but you can't have everything.
I'm feeling great, aside from a few residual digestive issues, which may be lingering aftereffects from the Avastin, so I should be mindful but not paranoid. I have no pain anywhere, which is pretty astonishing in light of where I was two years ago.
The EKG I had recently showed that my heart is better than normal. Even if I were to suffer some loss of function from the Adriamycin, it would do just fine. There is a lifetime limit on Adriamycin because it does cause heart damage, but according to Lita, if it does well and keeps me stable, it may be possible to take "heart protecting" drugs to be able to prolong its use.
She also said that I was looking great, and wanted to know what was different. Had I done my eyebrows differently, or something? I said that I've been wearing the blonde wig a lot, and today's was brown. I didn't mention (although this could also be a factor) that I've lost about ten pounds and am nearly in the weight range that was "normal" for me--without having to exert special effort--when I was healthy. I dunno. I just FEEL better. I've been chipper and snarky (to Brian's chagrin, no doubt).
We walked in the door today after coming home from infusion just in time to answer Lita's phone call: she had my lab results which weren't available at the appointment. My CA15.something-or-other test shows that my tumor markers have dropped about forty points. The CEA test (also for tumor markers) blipped up a little bit, but it is Lita's opinion that the CA15 is more specific to breast cancer and therefore more important. I'm pretty happy with that. She also said my liver function was "much improved," which is pretty groovy.
November 5 was the four-year anniversary of my mastectomy. October 30 was the two-year anniversary of being diagnosed with metastatic disease. This could be a depressing time of year if I wasn't feeling so terrific. I got good news, I got my energy back. I'm bald and gimpy, but you can't have everything.
Labels: Adriamycin, Avastin, baldness, Brian, Dr. Hayes, Lita, liver, tumor marker, wigs
Tuesday, October 23, 2007
May Have Played the Cancer Card
This past weekend I drove to Cleveland to see my dad and visit with my Grandma, aunts, one uncle, and several of my cousin's kids. On the way there, I was pulled over by one of Michigan's finest. I was driving somewhat fast-ish, and figured I deserved a speeding ticket.
When he pulled me over and asked for my license, registration, and proof of insurance, I accidentally gave him the Saturn registration and utterly failed to find my proof of insurance (which turned out to be at home in a different purse). Then he pointed out to me that my license tags had expired. Of course...my birthday came and went. I completely forgot about renewing my tags as the Secretary of State had not seen fit--for the second time this year--to send a renewal notice. Then he also pointed out that the expired registration indicated the car was a four-door and not a two-door. "Were you aware of that?"
"No," I squeaked.
He went back to his vehicle and did whatever it is they do back there while you are squirming in your seat. I might have cried a little bit. I blew my nose.
When he came back, he told me he would let me off with a warning, but I needed to get it taken care of right away. "Be careful," he told me.
I was very surprised, since I actually had committed a number of offenses (although the only one I did on purpose involved the celerity with which I was zipping down the road). I had not put on a wig that day, figuring the back would just get tangled in the car and I'd swap the bandana for hair when I got closer to Grandma's house.
Maybe I inadvertently played the cancer card. Maybe he decided not to give the bald lady a ticket because he'd feel guilty doing it.
It does happen: I think people panic and become unsettled with somebody who looks visibly ill or different. I have on more than one occasion cut to the front of the baby frappuccino line at Race for the Cure. Hollywood stars get clothes and jewelry all the time for looking abnormally fabulous; have you ever seen the amazing bags of swag they get for going to the Oscars? No one's giving me iPods, furs, and expensive perfume. No one need be jealous of us if we play the card from time to time--whether we mean to or not.
Neupogen to boost your white blood cell count: $1000
A Year's worth of chemo and Avastin: $100,000
A trip to the ER for an emergency CT scan: $50
Getting out of a ticket because you're bald and feeble: priceless.
When he pulled me over and asked for my license, registration, and proof of insurance, I accidentally gave him the Saturn registration and utterly failed to find my proof of insurance (which turned out to be at home in a different purse). Then he pointed out to me that my license tags had expired. Of course...my birthday came and went. I completely forgot about renewing my tags as the Secretary of State had not seen fit--for the second time this year--to send a renewal notice. Then he also pointed out that the expired registration indicated the car was a four-door and not a two-door. "Were you aware of that?"
"No," I squeaked.
He went back to his vehicle and did whatever it is they do back there while you are squirming in your seat. I might have cried a little bit. I blew my nose.
When he came back, he told me he would let me off with a warning, but I needed to get it taken care of right away. "Be careful," he told me.
I was very surprised, since I actually had committed a number of offenses (although the only one I did on purpose involved the celerity with which I was zipping down the road). I had not put on a wig that day, figuring the back would just get tangled in the car and I'd swap the bandana for hair when I got closer to Grandma's house.
Maybe I inadvertently played the cancer card. Maybe he decided not to give the bald lady a ticket because he'd feel guilty doing it.
It does happen: I think people panic and become unsettled with somebody who looks visibly ill or different. I have on more than one occasion cut to the front of the baby frappuccino line at Race for the Cure. Hollywood stars get clothes and jewelry all the time for looking abnormally fabulous; have you ever seen the amazing bags of swag they get for going to the Oscars? No one's giving me iPods, furs, and expensive perfume. No one need be jealous of us if we play the card from time to time--whether we mean to or not.
Neupogen to boost your white blood cell count: $1000
A Year's worth of chemo and Avastin: $100,000
A trip to the ER for an emergency CT scan: $50
Getting out of a ticket because you're bald and feeble: priceless.
Labels: Avastin, baldness, birthday, chemo, CT scan, Dad, Grandma, hospital, Neupogen, Race for the Cure, vacation, wigs
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
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, February 27, 2007
Red Tide: or, Why I shouldn't have thrown out my tampons
No, this is not the Janet's Blog version of "a very special episode of [insert name of family sitcom here]."
The dry, winter air, combined perhaps with regularly being infused with Avastin (which can cause such side effects) has resulted in some fairly predictable nosebleeds. I learned from She's the Man that tampons are good for absorbing those unexpected nasal flows--or at least that was Amanda Bynes' justification for having them in her bag when she was supposed to be a boy.
Walking around with a rolled up cylinder of toilet paper in my nostril this morning (also last night), it suddenly occurred to me that I could have used my remaining box of Tampax Pearl to help my current situation, and it's a sad waste that I threw them out. Rolling up little wads of toilet paper is ok, but the toilet paper dissolves easily and then I'm left with dissolved bits of toilet paper clinging to my nostril and upper lip once the flow is staunched.
Brian has valiantly searched, but the humidifier--which got packed away for moving--eludes him. I have been using a nasal gel called "Ayr," but it can only reach so far. My cracked, Saharalike sinuses will not be soothed by half-measures and see fit to regularly release the red sea.
Blech.
The dry, winter air, combined perhaps with regularly being infused with Avastin (which can cause such side effects) has resulted in some fairly predictable nosebleeds. I learned from She's the Man that tampons are good for absorbing those unexpected nasal flows--or at least that was Amanda Bynes' justification for having them in her bag when she was supposed to be a boy.
Walking around with a rolled up cylinder of toilet paper in my nostril this morning (also last night), it suddenly occurred to me that I could have used my remaining box of Tampax Pearl to help my current situation, and it's a sad waste that I threw them out. Rolling up little wads of toilet paper is ok, but the toilet paper dissolves easily and then I'm left with dissolved bits of toilet paper clinging to my nostril and upper lip once the flow is staunched.
Brian has valiantly searched, but the humidifier--which got packed away for moving--eludes him. I have been using a nasal gel called "Ayr," but it can only reach so far. My cracked, Saharalike sinuses will not be soothed by half-measures and see fit to regularly release the red sea.
Blech.
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
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
Wednesday, May 24, 2006
Second Verse, Same as the First (reprise)
I've been here before. I've been to a second dose of chemotherapy. The last time I had a second dose of chemotherapy I didn't suddenly have trouble breathing, have to have the treatment temporarily stopped, be given oxygen, and then have the treatment team paged.
Apparently Taxol can do that to you. I had some kind of reaction (which they assured me was not uncommon) and that I'd probably be fine and never have that reaction again. they gave me some benadryl to be on the safe side. It was very weird; it felt like my lungs just weren't working and my face turned beet red. I certainly hope it doesn't happen again; it delayed things and I ended up not getting out of there until after 6 p.m. I don't know why it is all of my appointments have to take so long.
The other day at Dr. Rodriguez's office, a patient showed up with a very demanding parent/guardian who insisted that the patient be seen despite not being in the system as having an appointment. We could hear the entire conversation through the walls, and I think his being there caused something of an uproar, disrupted the schedule, and I ended up being the last patient out of the office. Why? Why me? Do I need to be a squeakier wheel? Should I complain more? Should I loftily proclaim I will leave or threaten legal action if I'm not seen now? Those options aren't appealing; I think most people are just trying to do their jobs and don't want to be harangued. It's just that I'm getting a little tired of being passed over and having things run later than they ought.
My dose of 1 chemotherapy drug actually also involves a drug designed to inhibit new blood vessel growth (this is something tumors like to do...they nest somewhere and set up their own blood supply...little f#$%ers), which naturally have to be delivered separately. Then of course, to help with nausea, I am given some anti-nausea meds beforehand, two in pill form and one intraveinously, which delays the chemo. Then of course there are bags of saline to "flush" and since I had an episode, benadryl and more saline. Everything adds up to me sitting there forever. Blargh. I don't know what Brian did while I was sleeping. My mom had a book with her before she left for her yoga class.
Then of course the ride is long to get home. They are going to start offering infusions at the Canton health center, which will be much more convenient (I hope).
Apparently Taxol can do that to you. I had some kind of reaction (which they assured me was not uncommon) and that I'd probably be fine and never have that reaction again. they gave me some benadryl to be on the safe side. It was very weird; it felt like my lungs just weren't working and my face turned beet red. I certainly hope it doesn't happen again; it delayed things and I ended up not getting out of there until after 6 p.m. I don't know why it is all of my appointments have to take so long.
The other day at Dr. Rodriguez's office, a patient showed up with a very demanding parent/guardian who insisted that the patient be seen despite not being in the system as having an appointment. We could hear the entire conversation through the walls, and I think his being there caused something of an uproar, disrupted the schedule, and I ended up being the last patient out of the office. Why? Why me? Do I need to be a squeakier wheel? Should I complain more? Should I loftily proclaim I will leave or threaten legal action if I'm not seen now? Those options aren't appealing; I think most people are just trying to do their jobs and don't want to be harangued. It's just that I'm getting a little tired of being passed over and having things run later than they ought.
My dose of 1 chemotherapy drug actually also involves a drug designed to inhibit new blood vessel growth (this is something tumors like to do...they nest somewhere and set up their own blood supply...little f#$%ers), which naturally have to be delivered separately. Then of course, to help with nausea, I am given some anti-nausea meds beforehand, two in pill form and one intraveinously, which delays the chemo. Then of course there are bags of saline to "flush" and since I had an episode, benadryl and more saline. Everything adds up to me sitting there forever. Blargh. I don't know what Brian did while I was sleeping. My mom had a book with her before she left for her yoga class.
Then of course the ride is long to get home. They are going to start offering infusions at the Canton health center, which will be much more convenient (I hope).
Labels: allergy, Avastin, Brian, chemo, Dr. Rodriguez, infusion, mom, nausea, Taxol
