Well, I think I've finally found a positive side effect for my otherwise misery-inducing chemo. Yes, it's true -- there is one, an actual RTBT. See all that blooming greenery outside my window? Normally, at this time of year, I'd be sneezing my head off, rubbing my eyes, and generally wishing I could claw out the inside of my throat. THIS year, thanks to the Decadron I get during chemo, I have not had any "seasonal allergies".
Yep, I get dosed with this steroid because one of the chemo drugs -- probably the ever annoying Cytoxan which also causes interstitial cystitis -- makes the skin on my arms, neck, and chest itch wildly, almost as if I had hugged a poison oak or something. (Fun, eh?)
So far, that's about the only upside I can see to all of the ever expanding panopoly of drugs I get, but I'll take it... since everything else is just SO MUCH fun: nausea, fatigue, bladder irritation, bloating (also from the steroid -- yum), "binding" (as my friend Judy so artfully puts it) and other digestive unhappiness, and changes in smell and taste.
The fact that I was pretty much gone from here for a week should tell you how perky I've been feeling lately. Usually, I get back to feeling almost normal right before it's time for the next round of chemo, but this past round left me feeling like road pizza all the time. And this past Friday was round 3 (only FIVE more to go! bah! and for a breakdown of the 3 hour routine, check out my April 3rd post.) So not surprisingly, I slept for 13 hours one night this weekend, and then 10 hours last night + 2 hours naps every day. (Do I sound like a geriatric or what?)
I took today off from work and did some work at home. I know that's an oxymoron, but the ability to crawl into bed for a nap when the nausea was too much for me, well, that's worth taking some work home.
And I know I need to drink a LOT of fluid (10-12 glasses/day) to flush out the chemo from my system, but too much water makes me queasy, so I know I've been insufficiently hydrated this weekend (for a chemo patient -- not for normal humans). Therefore, I've been searching for all sorts of other stomach-settling fluids: seltzer, Gus' ginger ale, cranberry juice mixtures, iced green tea, OJ, etc. (I'm sure the combination of steroids and fruit juices has also contributed to my 10 lb. weight gain since the surgery, but that's the least of my problems these days.)
Meanwhile, my oncology team does not seem to want to allow me to switch (ggrrrr...) from Fridays to Thursdays, but I am placing my faith in the social worker at the hospital, who is well versed in the ways of medical bureaucracy. Unfortunately, this means I will be in limbo for the next several weeks during the transition, a situation that pleases me not at all (and makes my sweetie severely displeased with the hospital administration) since I plan to avoid dealing with the current team at all costs... well, unless I wind up with another fever requiring a trip to the ER again -- then I will have to speak to them. Otherwise, I refuse to ask them any questions because I like and trust them THAT much.
This past Friday, I met with a different oncology team because the usual doctor was away, and I really liked the new oncologist, so I know it's not that I dislike ALL oncologists, just my current one. However, since the covering oncology team is also on Fridays only, and my reason for switching is to move to Thursdays (more on that in a moment) I will not have the option of working with the new doctor.
Yes, the hospital really doesn't like people to switch teams because time is money, blah blah blah, so explaining that you don't want to work with your current doctor because you don't feel comfortable with them is not enough reason. I mean, just because they are in charge of your cancer treatment, why should you need to trust them and feel at ease? (Do I sound bitter? 'Cos I feel bitter.) No, they will only respect a logistical reason such as: if I get chemo on Thursdays, I can work Fridays and Mondays and collapse at home on the weekends, but I get chemo on Fridays, then I need to take off Mondays as well. (Day 1 = treatment day; days 3 & 4 = worst days for me).
So the current asinine compromise is to schedule my next treatment on Thursday, May 14th, but not see the oncologist. (TELL ME how this makes any sense.) If they tell me I have to go see her on Friday the 15th I will refuse, since the whole point of this exercise is to reduce my days off!
Just thinking about this is irking me so I had better log off and go relax before going to sleep.
Yep, I get dosed with this steroid because one of the chemo drugs -- probably the ever annoying Cytoxan which also causes interstitial cystitis -- makes the skin on my arms, neck, and chest itch wildly, almost as if I had hugged a poison oak or something. (Fun, eh?)
So far, that's about the only upside I can see to all of the ever expanding panopoly of drugs I get, but I'll take it... since everything else is just SO MUCH fun: nausea, fatigue, bladder irritation, bloating (also from the steroid -- yum), "binding" (as my friend Judy so artfully puts it) and other digestive unhappiness, and changes in smell and taste.
The fact that I was pretty much gone from here for a week should tell you how perky I've been feeling lately. Usually, I get back to feeling almost normal right before it's time for the next round of chemo, but this past round left me feeling like road pizza all the time. And this past Friday was round 3 (only FIVE more to go! bah! and for a breakdown of the 3 hour routine, check out my April 3rd post.) So not surprisingly, I slept for 13 hours one night this weekend, and then 10 hours last night + 2 hours naps every day. (Do I sound like a geriatric or what?)
I took today off from work and did some work at home. I know that's an oxymoron, but the ability to crawl into bed for a nap when the nausea was too much for me, well, that's worth taking some work home.
And I know I need to drink a LOT of fluid (10-12 glasses/day) to flush out the chemo from my system, but too much water makes me queasy, so I know I've been insufficiently hydrated this weekend (for a chemo patient -- not for normal humans). Therefore, I've been searching for all sorts of other stomach-settling fluids: seltzer, Gus' ginger ale, cranberry juice mixtures, iced green tea, OJ, etc. (I'm sure the combination of steroids and fruit juices has also contributed to my 10 lb. weight gain since the surgery, but that's the least of my problems these days.)
Meanwhile, my oncology team does not seem to want to allow me to switch (ggrrrr...) from Fridays to Thursdays, but I am placing my faith in the social worker at the hospital, who is well versed in the ways of medical bureaucracy. Unfortunately, this means I will be in limbo for the next several weeks during the transition, a situation that pleases me not at all (and makes my sweetie severely displeased with the hospital administration) since I plan to avoid dealing with the current team at all costs... well, unless I wind up with another fever requiring a trip to the ER again -- then I will have to speak to them. Otherwise, I refuse to ask them any questions because I like and trust them THAT much.
This past Friday, I met with a different oncology team because the usual doctor was away, and I really liked the new oncologist, so I know it's not that I dislike ALL oncologists, just my current one. However, since the covering oncology team is also on Fridays only, and my reason for switching is to move to Thursdays (more on that in a moment) I will not have the option of working with the new doctor.
Yes, the hospital really doesn't like people to switch teams because time is money, blah blah blah, so explaining that you don't want to work with your current doctor because you don't feel comfortable with them is not enough reason. I mean, just because they are in charge of your cancer treatment, why should you need to trust them and feel at ease? (Do I sound bitter? 'Cos I feel bitter.) No, they will only respect a logistical reason such as: if I get chemo on Thursdays, I can work Fridays and Mondays and collapse at home on the weekends, but I get chemo on Fridays, then I need to take off Mondays as well. (Day 1 = treatment day; days 3 & 4 = worst days for me).
So the current asinine compromise is to schedule my next treatment on Thursday, May 14th, but not see the oncologist. (TELL ME how this makes any sense.) If they tell me I have to go see her on Friday the 15th I will refuse, since the whole point of this exercise is to reduce my days off!
Just thinking about this is irking me so I had better log off and go relax before going to sleep.
*big hugs*
ReplyDeleteHang in, Squirrel. If they won't figure out how to let you switch, maybe you need to raise your concerns with the original oncologist. It sounds like you are getting proper care from a technical perspective -- maybe you can figure out a way to raise your concerns with her in a way that will improve your treatment (would be better if you could switch, but at least you are getting state of the art treatment -- they just need to work on the personal side of things -- patient care is more than just science).
ReplyDeleteBig hugs girl! Way to look for that silver lining!
ReplyDeleteGrrrrrr, though. You should be able to change doctors anytime you damn want. I hate the healthcare in this friggin' country.
ReplyDeleteIt is ridiculous that they are making you go through so many hoops ...
ReplyDelete