Today seemed like a good day to chart my "progress" toward returning to a "normal" life. Now, before you start laughing, yes, I know that "normal" is a relative term and that my life has a new normal now. Every day I deal with my new normal, but I couldn't really find a better word.
So, here's how I feel today, which is:
29 weeks after my last chemo treatment. (Seriously? It's already been that long? It feels like just yesterday. I am still traumatized by the thought of waking up every week to willingly put myself through that. 16 rounds of chemo in 20 weeks is still unfathomable to me...some days I don't know how I survived. Some days, I don't think I did survive).
9 weeks after my last radiation treatment.
2 weeks after my 5th, and hopefully FINAL, surgery. KNOCK. ON. WOOD.
Numb: Lots of different ways to interpret this, and it is possible that I am a little numb to the world, but I actually mean this in the most literal sense. My hands and feet are still numb, a residual effect of the chemo. There are days that are better than others which gives me hope that some day, ten years from now, everything will be back to normal. But then there are days when it is worse and I think, no such luck. But I'm so used to it dealing with it now, that I really don't notice it.
Tired: I can't imagine a day when I'll be back to the way I was before all these treatments started. I definitely have good days and bad days as far as my energy level goes, and maybe that's the most annoying thing...that there isn't rhyme nor reason to why I feel especially tired one day over another. I can be feeling great and then suddenly, WHAM! I've hit the wall and cannot go on. Or I'll wake up at noon one day and not have the energy to get out of bed. I've been known to yell at Keith, "why did you let me sleep that long?!?!" To which he always replies, "you obviously needed the sleep." Well, yes, but I would also like to be a functional human being every day, not a sloth. Oh well, a girl can dream.
Angry and Emotional: I'm not even sure what to call this category, but I'm pretty sure that it all goes back to PTSD, which I'm positive that I have. (After further study, I have learned that 10% of cancer survivors have full-blown PTSD, and 60% of cancer survivors have some form of PTSD. I'll be doing a future blog post linking you to some of my findings, written by people who did a much better job of explaining it). I have panic attacks, anxiety, moments of profound anger, unexplainable emotional outbreaks...I feel like I'm a ticking time bomb. When Keith and I went to Vegas in September, I almost had to have them bring the airplane down somewhere over the Nevada desert as I was having a full-blown panic attack. Yes, I know I need to get help for this...I'm working on it. Just been a little busy. This is my goal for December or the new year, I promise.
Stupid: Chemo brain and I are not friends, but I'm finding ways to hopefully make up for my lack of brain power on many days. I watch the kids compensating for how they have learned to deal with me and I feel bad. Teen boy will yell at little sister for constantly repeating a question, but I know that she's doing it because she thinks she has to. I have also since learned that memory issues are a symptom of PTSD (see above), so there's that too.
Sore: Well, that has to be a given, right? I just had surgery 2 weeks ago. I actually feel much better this week than I did last week. But the doctor says that I still have 2-3 weeks until I can "do" things more exhausting than walking. But Vegas for Thanksgiving is still on, because really, that's all about eating and sitting in the sun, and pretty much nothing was going to stop me. Just don't make me laugh.
Old: I feel like I have the body of someone who is at least 20 years older than me. I hope that some of that goes away over time as my energy level increases. But chemo threw me into menopause, and this most recent surgery will make sure that I stay there, and it's not any fun. Chemo-induced menopause hits you like a ton of bricks and never lets up. And since having my ovaries removed, it's just gotten worse. Okay, so it's not like I didn't think it was going to happen, but I really didn't think it could get worse. HA! I greatly misjudged that one! Oh well, nothing I can do about it now...it's not like they're putting anything back. I do have an appointment with the chemo doc after the holiday and we will discuss if there is any way to manage these MOST ANNOYING symptoms.
Tired: Did I mention this already? I'm sure that it doesn't have anything to do with the horrible insomnia that I have (again, a symptom of PTSD and menopause, so not sure who's at fault here). I would say that it's gotten worse since the surgery, and 3:00-4:00am is my new bedtime, if I'm lucky. Which is awesome when everyone has to get up at 6:15am to get ready for school.
Misc: Every time I do presentations about books to kids or grown-ups, I always have a "Misc" category, so why should this be any different.
My range of motion is still not what it was, and this is completely on me for not continuing with physical therapy. At some point, you just start bleeding money and you're tired of being in yet another doctor's office, so these appointments were a casualty of both. But I did just start up my massage treatments again this week.
My taste buds are probably at 70% of what they were, and I know this will not change. So many things no longer taste good to me, and many things that I didn't like before chemo I love now. Crazy! But survivable.
My hair is growing back but I think my eyelashes are starting to fall out again (which scares me). I'm currently pretending that my eyelashes aren't really thinning (ignorance is bliss). The hair is a weird entity that doesn't feel like mine. I don't mind it short at all, but the color is so strange, and the texture is different (it reminds me of cat fur), and the curls are making me insane. But we have determined that we don't think there is nearly the amount of grey there was, so possibly one perk?!
Ongoing concerns: I continue to take Tamoxifen every day (and likely will for the next 5 years). But I'm going to check on this at next appointment because I'm kinda not a fan. I have my first scan and blood work scheduled for December, and then it just keeps going every few months after that. Will keep you updated. Also, it's very hard to explain what it's like to be living a life where there's a possibility of recurrence around every corner. Where you never truly get a clean bill of health. Where you live in fear of what they may find on the next scan. Where they tell me "if you're alive in five years, then the treatment worked." Awesome! I try to think positive and not worry, but there's always a nagging fear out there...
GRATEFUL: Again, it will never be possible for me to thank every one individually for all that you have done for me and my family. I cannot even put into words the gratitude that I feel...I get emotional just thinking about how lucky I am to be surrounded by friends, family, and a community that cares. Really and truly the only thing that I can do is pay it forward (or return the favor if you ever need it). Stay tuned for my Thanksgiving Day post...
Hopeful: Just this past week, I have started to look to the "future" and things that I want to do. A couple of things that are on my radar right now include forming a team (or two) to participate in the June, 2014 Relay for Life event here in Redmond. I will be doing this and will update you once I register. I'm stumped on a team name, but hope to have one in the next few weeks. If enough of you want to join me, we can have 2 teams...or a kids' team. (They recommend 15-20 people/team). Let me know! Or find a Relay for Life event in your area to participate in! I am also setting my sights on competing in an Athleta Iron Girl triathlon in August, 2014. (It's nowhere near Ironman distances so don't be thinking great things about me just yet). But I've enlisted the help of a friend (and Ironman competitor) who has promised to whip me into shape! And to do the event with me! Anyone else want to join?!
And, lastly, my more immediate goal is to read ALL the back issues of Food Network magazine that I haven't touched since October, 2012. Food has definitely not been my friend this past year, but now, I'm in a place where I want to peruse them! Grateful for these small miracles!
Showing posts with label chemo brain. Show all posts
Showing posts with label chemo brain. Show all posts
Monday, November 18, 2013
Tuesday, October 22, 2013
Chemo Brain in Action
Just thought I'd offer further proof that chemo brain is a real thing...and so much fun to deal with. Here are just a few examples from my daily journeys:
(1) At the new surgeon's office, filling out paperwork/forms (because you can obviously never do that enough), I was stumped by one of the questions.
Marital Status S/M
I was supposed to circle an answer.
I am not kidding when I say that I had to skip the question on the first pass because I didn't even know what marital status was. The second pass didn't really clarify the question for me and I finally had to ask Keith for help. He had a great laugh over this. Good thing that he was there to help my brain along.
(2) Going through the drivethru with the teenage boy on the way to his soccer game. We had hoped to stop for breakfast sandwiches at Starbucks, but they were out, so we were forced through the Wendy's drivethru. I ordered his sandwich, gave the guy a $20, and drove off. While teenage boy is screaming, "What about your change????!" Had no idea what he was talking about or any memory of handing the guy a $20. (Luckily, there was no one behind us in line, so I could do a quick back-up in the lane and collect my $18.50).
(3) A co-worker asked me to order a book for her. She even wrote down the title and gave me her school credit card number. It is on a giant sheet of paper stuck to my desk...I've looked at it every day I've been at work for the past 2 weeks. Yesterday she asked me when I thought the book would arrive. Hmmm....that would require me to have ordered it, right? Whoops!
These are just small samplings of what it's like to be me on a regular basis. This does not include all the sentences I speak where I mix up the words (though this is fun to watch the kids' brains spinning trying to translate what I meant to say without asking me to repeat it). Or the times that I forget the kids' names. Or that I've had my son's paycheck from reffing soccer in my purse for 4 weeks now because I forgot to go to the bank (even though there is a sticky note stuck to the dash for all those weeks that says, "BANK!").
Chemo brain ROCKS...
(1) At the new surgeon's office, filling out paperwork/forms (because you can obviously never do that enough), I was stumped by one of the questions.
Marital Status S/M
I was supposed to circle an answer.
I am not kidding when I say that I had to skip the question on the first pass because I didn't even know what marital status was. The second pass didn't really clarify the question for me and I finally had to ask Keith for help. He had a great laugh over this. Good thing that he was there to help my brain along.
(2) Going through the drivethru with the teenage boy on the way to his soccer game. We had hoped to stop for breakfast sandwiches at Starbucks, but they were out, so we were forced through the Wendy's drivethru. I ordered his sandwich, gave the guy a $20, and drove off. While teenage boy is screaming, "What about your change????!" Had no idea what he was talking about or any memory of handing the guy a $20. (Luckily, there was no one behind us in line, so I could do a quick back-up in the lane and collect my $18.50).
(3) A co-worker asked me to order a book for her. She even wrote down the title and gave me her school credit card number. It is on a giant sheet of paper stuck to my desk...I've looked at it every day I've been at work for the past 2 weeks. Yesterday she asked me when I thought the book would arrive. Hmmm....that would require me to have ordered it, right? Whoops!
These are just small samplings of what it's like to be me on a regular basis. This does not include all the sentences I speak where I mix up the words (though this is fun to watch the kids' brains spinning trying to translate what I meant to say without asking me to repeat it). Or the times that I forget the kids' names. Or that I've had my son's paycheck from reffing soccer in my purse for 4 weeks now because I forgot to go to the bank (even though there is a sticky note stuck to the dash for all those weeks that says, "BANK!").
Chemo brain ROCKS...
Tuesday, July 2, 2013
How I Feel Today
It has been 9 weeks plus 1 day since my last round of chemo (that's 64 days for those of us with math skills). Since that dose on 4/29, I've had scans, scans, and more scans, a bazillion doctors appointments, and another round of surgeries (three surgeries on one day, for which I'm sure I will be billed triple). And I have tried to rest and recuperate in anticipation of radiation starting on 7/15. Oh, and I've picked a fight with the DMV.
This is the part of cancer treatments that gets a little sketchy. Your hair starts growing back, you get a little energy, and people start to forget you have cancer. Or they expect you to be better. Or your school district can't imagine why you can't possibly be at work and therefore needs yet another doctor's note proving you are sick. (Let me repeat: IMMUNE SYSTEM COMPROMISED + MIDDLE SCHOOL KIDS = NOT HEALTHY). You don't look like a cancer patient, so people don't realize that you still feel bad. (This is not a rant against my family and friends, by the way...all of you have been amazing. But the random person looking at me on the street probably doesn't realize what I'm going through simply by looking at me).
Since I think I did a "here's how I feel 2 weeks after chemo" post, and maybe another one at one month after, I thought I would continue the tradition with a How I Feel Today, a little over 2 months post-chemo. I hope that it helps anyone going through the process (or their loved ones) understand that how you feel doesn't magically go back to "normal" the day after chemo. And unfortunately, some of these items listed below are permanent or could be YEARS before they go back to the way they were.
In no particular order:
(1) I have dropped 8 of the 18 or so pounds that I gained. I feel like the last 10 will NEVER go away and had to resort to accepting my mom's offer to buy me some summer clothes. Ugh. That's a size I've never seen before...
(2) My taste buds have sort of returned. I almost hate to type this as I'm sure that I am tempting fate, but I'm pretty sure that they are 2/3 to 3/4 back to what they were. Some things still taste funky, and I can eat much spicier food than I used to be able to tolerate. I actually think that this is the new normal for my taste buds and that there is no getting better from here. But having been to the dark side, I will not be complaining about this. THANK YOU to everyone that has taken me out to eat these past months and said, "what would YOU like to eat?"
(3) My feet are still numb. Not 24/7, but enough of the day to be weird. But again, I'm so used to it now that I don't actually notice it except at night when I'm not walking around and they are tingling. And I think my one shoulder blade is actually still numb in places. But I told the doc it was better so that'll just be our little secret. (And I typed "is what" instead of "it was" on the first go-round here...see #12).
(4) My temperature regulation is CRAP! Chemo-induced menopause still in effect here. I really feel like this one might be permanent also. Some days it is SO HORRIBLE. I can be such a sweaty mess at times, and no, it's not because it's been hot here or after I've been doing something active. I just randomly start dripping from head to toe while watching TV, shopping in a store, standing and talking to people. Super fun!
(5) I am holding my fingernails on with a wing and a prayer...I feel a little like McGyver. I know that I've said for WEEKS that they are days away from falling off, but I really do mean it. So far, I haven't lost any, KNOCK ON WOOD. I do have to keep cutting them short and gluing them together and I swear I am one snag away from losing 3 of them at once, but I still have all ten. They are UGLY though...all black and brown and detached from the skin in places.
(6) My foot is feeling better, but I still have to walk around in cushy shoes and wear band-aids. Just when I think I'm better, I try to go up the stairs or stand for a period of time without the shoes and I realize that it hurts. (Totally not related to chemo, but thought I'd mention it).
(7) I still have bruises from the latest surgery, especially where the port was. Beautiful greenish-yellow bruises.
(8) I have no feeling in the skin for about an inch all around the 3 inch scar across my chest. I don't think I ever will either. Four surgeries pretty much killed all the nerves there is my guess. And the scars are angry looking. Not infection angry, but it looks like I need to come up with a good story to accompany them. One friend sent me a card that suggested I say I fell in the fountains at the Bellagio...sounds perfect!
(9) The area in my breast/chest that has been operated on so many times is, quite understandably, missing quite a bit of tissue. Now, you'd have to stare at it pretty hard to really notice (because I'm a master of dressing and didn't really have any boobs to start with), but in this warm weather when we've all been wearing tank tops you can really see it. It's about the size of a little kid's jumbo sized crayon and runs perpendicular to the scar. Running my hand over the area (which I have taken to calling the divot) to put lotion on the scar kind of freaks me out.
(10) My hair is growing back. The hair on my head is really a horrible color. I'm thinking it's going to be dyed some cool color in the very near future as I really can't look at it anymore. My eyebrows are coming in a different color from my hair which is awesome (NOT!). And I'm a little grumpy that I have to start shaving my legs again. Especially because I don't have eyelashes yet. Seriously?? Can my system not figure this all out please?!
(11) My short term memory BLOWS. Please don't tell me it's because I'm getting older and that it happens to everyone. I don't really care. I think I might actually qualify for a study/treatment at the UW for this. If only I could remember where I put the information about how to contact the program. I wish I was kidding!
(12) I have developed some sort of weird stroke-like symptom where I'm saying words in my head, but they come out of my mouth all garbled. It doesn't happen all the time, and so far no one has pointed this out while it's happening, which means either my family and friends are really polite and ignoring this OR it's only happening in my head and I'm the only one that can hear this. I'm kind of scared that it's the latter.
(13) I suffer from shortness of breath a lot. All this chemo damaged my heart.
(14) I find out in 2 weeks if I'm healthy enough to start Tamoxifen. This will be a pill taken every day forever (or 5 years...same thing) and is something I get to do because my cancer was estrogen positive. Last month when I went in for evaluation for it, I was not deemed fit to handle it. Probably because I was just coming out of my 10 days of PAIN and I wanted to kill everyone.
(15) I CANNOT remember to take my vitamins every day (see #11). I've tried everything...setting a reminder in my phone...moving where the vitamins are kept...NOTHING works. And then when I do remember to take them, I can't remember if I've already taken them for the day (again, see #11). I really do need to break down and get one of those old people weekly pill containers.
(16) I did not have any allergies this year. This was kind of a perk. Granted, it's because my immune system is still shot to hell, but if there are small mercies in this whole process, then I'll take this one.
(17) Things I probably should ask about at my next appointment: Should I still be staying out of the sun? (I think yes, but I'd like to hear no). Is it okay to drink that birthday mojito or is my liver still on overload from all the poisoning the chemo did? When is it okay to go to the dentist again? (Well, I really don't want to ask that one because I'm okay with not going to the dentist, but I probably shouldn't avoid it any longer than I have to).
(18) Being TIRED for no reason at all, at random points in the day, and without warning goes without saying. I cannot imagine a time when I will ever be able to go back to work full-time again.
(19) So very thirsty...all the time...
(20) I have ZERO hand strength. The biggest inconvenience is that I cannot open anything...like bottles of water/tea. In fact, as Keith is getting ready to leave for 3 weeks with the kids, I told him to open all the bottles before he leaves or I might die of dehydration!
I have good days and bad days still. I've said this quite a bit, but yucky is my new normal. It's amazing how crappy you can get used to feeling. I hope that some day I won't feel like I'm a 60 year old...at least until I really am a 60 year old.
This is the part of cancer treatments that gets a little sketchy. Your hair starts growing back, you get a little energy, and people start to forget you have cancer. Or they expect you to be better. Or your school district can't imagine why you can't possibly be at work and therefore needs yet another doctor's note proving you are sick. (Let me repeat: IMMUNE SYSTEM COMPROMISED + MIDDLE SCHOOL KIDS = NOT HEALTHY). You don't look like a cancer patient, so people don't realize that you still feel bad. (This is not a rant against my family and friends, by the way...all of you have been amazing. But the random person looking at me on the street probably doesn't realize what I'm going through simply by looking at me).
Since I think I did a "here's how I feel 2 weeks after chemo" post, and maybe another one at one month after, I thought I would continue the tradition with a How I Feel Today, a little over 2 months post-chemo. I hope that it helps anyone going through the process (or their loved ones) understand that how you feel doesn't magically go back to "normal" the day after chemo. And unfortunately, some of these items listed below are permanent or could be YEARS before they go back to the way they were.
In no particular order:
(1) I have dropped 8 of the 18 or so pounds that I gained. I feel like the last 10 will NEVER go away and had to resort to accepting my mom's offer to buy me some summer clothes. Ugh. That's a size I've never seen before...
(2) My taste buds have sort of returned. I almost hate to type this as I'm sure that I am tempting fate, but I'm pretty sure that they are 2/3 to 3/4 back to what they were. Some things still taste funky, and I can eat much spicier food than I used to be able to tolerate. I actually think that this is the new normal for my taste buds and that there is no getting better from here. But having been to the dark side, I will not be complaining about this. THANK YOU to everyone that has taken me out to eat these past months and said, "what would YOU like to eat?"
(3) My feet are still numb. Not 24/7, but enough of the day to be weird. But again, I'm so used to it now that I don't actually notice it except at night when I'm not walking around and they are tingling. And I think my one shoulder blade is actually still numb in places. But I told the doc it was better so that'll just be our little secret. (And I typed "is what" instead of "it was" on the first go-round here...see #12).
(4) My temperature regulation is CRAP! Chemo-induced menopause still in effect here. I really feel like this one might be permanent also. Some days it is SO HORRIBLE. I can be such a sweaty mess at times, and no, it's not because it's been hot here or after I've been doing something active. I just randomly start dripping from head to toe while watching TV, shopping in a store, standing and talking to people. Super fun!
(5) I am holding my fingernails on with a wing and a prayer...I feel a little like McGyver. I know that I've said for WEEKS that they are days away from falling off, but I really do mean it. So far, I haven't lost any, KNOCK ON WOOD. I do have to keep cutting them short and gluing them together and I swear I am one snag away from losing 3 of them at once, but I still have all ten. They are UGLY though...all black and brown and detached from the skin in places.
(6) My foot is feeling better, but I still have to walk around in cushy shoes and wear band-aids. Just when I think I'm better, I try to go up the stairs or stand for a period of time without the shoes and I realize that it hurts. (Totally not related to chemo, but thought I'd mention it).
(7) I still have bruises from the latest surgery, especially where the port was. Beautiful greenish-yellow bruises.
(8) I have no feeling in the skin for about an inch all around the 3 inch scar across my chest. I don't think I ever will either. Four surgeries pretty much killed all the nerves there is my guess. And the scars are angry looking. Not infection angry, but it looks like I need to come up with a good story to accompany them. One friend sent me a card that suggested I say I fell in the fountains at the Bellagio...sounds perfect!
(9) The area in my breast/chest that has been operated on so many times is, quite understandably, missing quite a bit of tissue. Now, you'd have to stare at it pretty hard to really notice (because I'm a master of dressing and didn't really have any boobs to start with), but in this warm weather when we've all been wearing tank tops you can really see it. It's about the size of a little kid's jumbo sized crayon and runs perpendicular to the scar. Running my hand over the area (which I have taken to calling the divot) to put lotion on the scar kind of freaks me out.
(10) My hair is growing back. The hair on my head is really a horrible color. I'm thinking it's going to be dyed some cool color in the very near future as I really can't look at it anymore. My eyebrows are coming in a different color from my hair which is awesome (NOT!). And I'm a little grumpy that I have to start shaving my legs again. Especially because I don't have eyelashes yet. Seriously?? Can my system not figure this all out please?!
(11) My short term memory BLOWS. Please don't tell me it's because I'm getting older and that it happens to everyone. I don't really care. I think I might actually qualify for a study/treatment at the UW for this. If only I could remember where I put the information about how to contact the program. I wish I was kidding!
(12) I have developed some sort of weird stroke-like symptom where I'm saying words in my head, but they come out of my mouth all garbled. It doesn't happen all the time, and so far no one has pointed this out while it's happening, which means either my family and friends are really polite and ignoring this OR it's only happening in my head and I'm the only one that can hear this. I'm kind of scared that it's the latter.
(13) I suffer from shortness of breath a lot. All this chemo damaged my heart.
(14) I find out in 2 weeks if I'm healthy enough to start Tamoxifen. This will be a pill taken every day forever (or 5 years...same thing) and is something I get to do because my cancer was estrogen positive. Last month when I went in for evaluation for it, I was not deemed fit to handle it. Probably because I was just coming out of my 10 days of PAIN and I wanted to kill everyone.
(15) I CANNOT remember to take my vitamins every day (see #11). I've tried everything...setting a reminder in my phone...moving where the vitamins are kept...NOTHING works. And then when I do remember to take them, I can't remember if I've already taken them for the day (again, see #11). I really do need to break down and get one of those old people weekly pill containers.
(16) I did not have any allergies this year. This was kind of a perk. Granted, it's because my immune system is still shot to hell, but if there are small mercies in this whole process, then I'll take this one.
(17) Things I probably should ask about at my next appointment: Should I still be staying out of the sun? (I think yes, but I'd like to hear no). Is it okay to drink that birthday mojito or is my liver still on overload from all the poisoning the chemo did? When is it okay to go to the dentist again? (Well, I really don't want to ask that one because I'm okay with not going to the dentist, but I probably shouldn't avoid it any longer than I have to).
(18) Being TIRED for no reason at all, at random points in the day, and without warning goes without saying. I cannot imagine a time when I will ever be able to go back to work full-time again.
(19) So very thirsty...all the time...
(20) I have ZERO hand strength. The biggest inconvenience is that I cannot open anything...like bottles of water/tea. In fact, as Keith is getting ready to leave for 3 weeks with the kids, I told him to open all the bottles before he leaves or I might die of dehydration!
I have good days and bad days still. I've said this quite a bit, but yucky is my new normal. It's amazing how crappy you can get used to feeling. I hope that some day I won't feel like I'm a 60 year old...at least until I really am a 60 year old.
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Thursday, May 16, 2013
Chemo is Over, Why Don't I Feel Better?
Call me crazy, but I actually thought that a week after chemo ended I would be on the road to feeling better. Clearly that was naive thinking. And probably has something to do with the fact that they conveniently don't tell you many of these things up front. It's not that they're lying to you exactly, but I guess they don't want to overwhelm you with small details like it could take MONTHS and maybe YEARS to start feeling like normal again. Oh, they tell me this now with a smile on their face that says, "you poor sweet girl, thinking this would all go away," but I hadn't considered that two weeks after chemo was over I'd still feel like crap. UGH!
Because I'd love for others not to be surprised by this, here is how I currently feel (or at least, what annoys me the most):
(1) I am pretty sure that I have aged TWENTY YEARS in these past 20 weeks. No joke, I feel like an old lady. Watch me start walking after sitting/standing for a few minutes and you will believe me.
(2) I am tired. All. The. Time.
(3) I am up 13-18 pounds from my pre-chemo weight. It depends on which weight you're comparing to...the first day of chemo weight or the summer weight before all this started. Either way...SUCKS! I have one pair of jeans and of course some great sweaters (which don't work so well with this unusual heat wave we've been having) that fit. Oh, and my pajama pants. But that's it. Keith has offered to loan me some of his soccer referee shorts...classic.
(4) I think part of this 13-18 pounds is water weight/edema. Dear God, my skin is tight everywhere: toes...arms...of course, legs. Ick. And this is normal. And no one is concerned. (Well, I am, and I'm starting to do something about it...shhh!) There is only about 20 minutes when I first wake up in the morning where I don't feel stiff and sore because of this. And do you know what they say to do to help with this? Don't stand for long periods of time. Sit with your feet elevated. Walk. Hmmm, call me crazy, but doesn't walking require standing for a period of time?
(5) My hair is growing back and I'm now a blonde. This is not bad, just weird!
(6) I will probably die of a heart attack before the cancer kills me. Okay, that's a little doom and gloom, but is a reality. The specific chemo I had damages your heart and you can only have so much of it in your lifetime. I've already hit my maximum dose. And when I walk up the stairs or lift boxes of Pantry Packs I am sure that I am having that heart attack.
(7) Chemo brain + me = stupid. Enough said.
(8) I can't remember what I was just going to type here. See #7.
(9) Oh yes, that's right, I was going to mention that I probably have half of my taste buds back. Which is GREATLY improved over having NONE, so I will not be complaining about this. I just had my first mocha since before Thanksgiving. Miracle. We ate at Dick's over the weekend and I could taste that cheap tarter sauce that you can smother your french fries in...and the french fries. (If you comment here about eating healthy, you will no longer be my friend).
(10) The neuropathy is getting better. I can feel my fingers most of the time (they do go numb intermittently still). My face is rarely numb, and I think that my shoulders are back to normal. So, only walking around on numb feet is still weird.
(11) I have NO temperature regulation. Can you say chemo-induced menopause? Oh yeah, this is a winner. And might be permanent. Because of my "age" there's no way to know for sure. Oh goodie.
(12) Pain, pain, and more pain. Yep, it's pretty constant. Not a sharp, shooting, someone stabbing me with an ice pick pain. But kind of a consistent, dull roar type of pain. All over. More fun.
(13) Will there ever be a day when I'm not DYING of thirst? Today, I was watching a tennis match at school. I had 2 bottles of water, 1 bottle of green tea, and 1 bottle of some weird flavored water. In 2 1/2 hours. Because I was sure I was going to die if I didn't. I've been typing this post next to an empty glass of water thinking my husband will be dead if he doesn't refill it soon.
(14) I've learned what "hitting the wall" really means. Because I've hit it. And when you use it in sports to discuss you're performance, you are not using it correctly. Because hitting a wall actually means HITTING. A. WALL. And not being able to go one baby step farther. I've done it a few times these past few weeks. I walked down the street to the neighbors' and thought I'd have to spend the night. I carried a cooler filled with water bottles across a soccer field and basically died in the stands. If only I was kidding.
(15) I'm TIRED of being a patient. And I'm starting to be a bad one. And I don't care.
That's all I can think of right now. Jealous, right? Fingers crossed that these get better some day...
Because I'd love for others not to be surprised by this, here is how I currently feel (or at least, what annoys me the most):
(1) I am pretty sure that I have aged TWENTY YEARS in these past 20 weeks. No joke, I feel like an old lady. Watch me start walking after sitting/standing for a few minutes and you will believe me.
(2) I am tired. All. The. Time.
(3) I am up 13-18 pounds from my pre-chemo weight. It depends on which weight you're comparing to...the first day of chemo weight or the summer weight before all this started. Either way...SUCKS! I have one pair of jeans and of course some great sweaters (which don't work so well with this unusual heat wave we've been having) that fit. Oh, and my pajama pants. But that's it. Keith has offered to loan me some of his soccer referee shorts...classic.
(4) I think part of this 13-18 pounds is water weight/edema. Dear God, my skin is tight everywhere: toes...arms...of course, legs. Ick. And this is normal. And no one is concerned. (Well, I am, and I'm starting to do something about it...shhh!) There is only about 20 minutes when I first wake up in the morning where I don't feel stiff and sore because of this. And do you know what they say to do to help with this? Don't stand for long periods of time. Sit with your feet elevated. Walk. Hmmm, call me crazy, but doesn't walking require standing for a period of time?
(5) My hair is growing back and I'm now a blonde. This is not bad, just weird!
(6) I will probably die of a heart attack before the cancer kills me. Okay, that's a little doom and gloom, but is a reality. The specific chemo I had damages your heart and you can only have so much of it in your lifetime. I've already hit my maximum dose. And when I walk up the stairs or lift boxes of Pantry Packs I am sure that I am having that heart attack.
(7) Chemo brain + me = stupid. Enough said.
(8) I can't remember what I was just going to type here. See #7.
(9) Oh yes, that's right, I was going to mention that I probably have half of my taste buds back. Which is GREATLY improved over having NONE, so I will not be complaining about this. I just had my first mocha since before Thanksgiving. Miracle. We ate at Dick's over the weekend and I could taste that cheap tarter sauce that you can smother your french fries in...and the french fries. (If you comment here about eating healthy, you will no longer be my friend).
(10) The neuropathy is getting better. I can feel my fingers most of the time (they do go numb intermittently still). My face is rarely numb, and I think that my shoulders are back to normal. So, only walking around on numb feet is still weird.
(11) I have NO temperature regulation. Can you say chemo-induced menopause? Oh yeah, this is a winner. And might be permanent. Because of my "age" there's no way to know for sure. Oh goodie.
(12) Pain, pain, and more pain. Yep, it's pretty constant. Not a sharp, shooting, someone stabbing me with an ice pick pain. But kind of a consistent, dull roar type of pain. All over. More fun.
(13) Will there ever be a day when I'm not DYING of thirst? Today, I was watching a tennis match at school. I had 2 bottles of water, 1 bottle of green tea, and 1 bottle of some weird flavored water. In 2 1/2 hours. Because I was sure I was going to die if I didn't. I've been typing this post next to an empty glass of water thinking my husband will be dead if he doesn't refill it soon.
(14) I've learned what "hitting the wall" really means. Because I've hit it. And when you use it in sports to discuss you're performance, you are not using it correctly. Because hitting a wall actually means HITTING. A. WALL. And not being able to go one baby step farther. I've done it a few times these past few weeks. I walked down the street to the neighbors' and thought I'd have to spend the night. I carried a cooler filled with water bottles across a soccer field and basically died in the stands. If only I was kidding.
(15) I'm TIRED of being a patient. And I'm starting to be a bad one. And I don't care.
That's all I can think of right now. Jealous, right? Fingers crossed that these get better some day...
Saturday, March 30, 2013
A Busy Week!
WOW! A busy week...hardly time to get in a good nap, let alone post here.
Here's what's been keeping me occupied:
(1) I agreed to record a webinar for the American Library Association (I do about 2 of these each year) on Tuesday. Luckily, this was an audio only webinar so I got to record it while sitting in bed, wearing my pajamas!
(2) The weather has been pretty decent so I've been trying to go walking. It has felt pretty good, though I think I killed the dog who is now limping after joining in the walk one day. Oh well...
(3) Discovered that the insurance may not be great but it does cover 42 massages/year. Oh, I promise you, I will be using all of those this year! Found a great place in Redmond, and it is wonderful to relax even if only for an hour.
(4) An award dinner on Thursday, where I was presented with a leadership award for my work with Pantry Packs. FUN evening. I had to give a speech, which I actually had to write down because chemo brain is making me STUPID and I knew that I'd forget important things that I wanted to say (like thanking my family). The night went well, I got to wear the Katy Perry wig, and I only spilled one drink (because my hands are numb and it slipped out of my hands...honest, it was a diet Coke). Really impressive display of gracefulness! And I left the award there, so clearly chemo brain has kicked in to full gear!
(5) Student benefit for me on Friday night. So much fun! I seriously cannot even tell you how fun the evening was. Spending it with current and former students (and some brave parents and teachers) was a good way to end a chemo day. The talent on display was incredible...I am in awe, and grateful that they didn't ask me to sing (which would have caused everyone to run screaming from the building). These teens are really going places. Feeling so blessed to be surrounded with love and support. Cannot thank the girl organizing the event ENOUGH! She is amazing in her own right and I am so proud that one day, when she is ruling the world, I will be able to say, "I knew her when..." (BTW, if you were there and have any video of the incredible performances, PLEASE send them to me. I'd love to use them for upcoming Music Mondays. I wasn't close enough to get good video).
(6) Oh yeah, there was chemo on Friday. Round 16!!! Only four more weeks of chemo to go...glory, glory, hallelujah.
(7) Let's throw in everything else: lacrosse, lacrosse, science experiment, Keith reffing...oh, and NAPS! I am so tired!
Here's hoping for a calmer week coming up. Actually, I'm pretty sure that I overdid it this week and won't be upright for days, which is sad because there is some pretty glorious sunshine out there right now.
Crap, I just realized that Easter is on Sunday and the bunny might not have anything to put in the baskets...do you put the husband in charge of this project? Hmmm...not sure about that prospect. After all, he did get a tattoo the last time he was left to his own devices.
Here's what's been keeping me occupied:
(1) I agreed to record a webinar for the American Library Association (I do about 2 of these each year) on Tuesday. Luckily, this was an audio only webinar so I got to record it while sitting in bed, wearing my pajamas!
(2) The weather has been pretty decent so I've been trying to go walking. It has felt pretty good, though I think I killed the dog who is now limping after joining in the walk one day. Oh well...
(3) Discovered that the insurance may not be great but it does cover 42 massages/year. Oh, I promise you, I will be using all of those this year! Found a great place in Redmond, and it is wonderful to relax even if only for an hour.
(4) An award dinner on Thursday, where I was presented with a leadership award for my work with Pantry Packs. FUN evening. I had to give a speech, which I actually had to write down because chemo brain is making me STUPID and I knew that I'd forget important things that I wanted to say (like thanking my family). The night went well, I got to wear the Katy Perry wig, and I only spilled one drink (because my hands are numb and it slipped out of my hands...honest, it was a diet Coke). Really impressive display of gracefulness! And I left the award there, so clearly chemo brain has kicked in to full gear!
(5) Student benefit for me on Friday night. So much fun! I seriously cannot even tell you how fun the evening was. Spending it with current and former students (and some brave parents and teachers) was a good way to end a chemo day. The talent on display was incredible...I am in awe, and grateful that they didn't ask me to sing (which would have caused everyone to run screaming from the building). These teens are really going places. Feeling so blessed to be surrounded with love and support. Cannot thank the girl organizing the event ENOUGH! She is amazing in her own right and I am so proud that one day, when she is ruling the world, I will be able to say, "I knew her when..." (BTW, if you were there and have any video of the incredible performances, PLEASE send them to me. I'd love to use them for upcoming Music Mondays. I wasn't close enough to get good video).
(6) Oh yeah, there was chemo on Friday. Round 16!!! Only four more weeks of chemo to go...glory, glory, hallelujah.
(7) Let's throw in everything else: lacrosse, lacrosse, science experiment, Keith reffing...oh, and NAPS! I am so tired!
Here's hoping for a calmer week coming up. Actually, I'm pretty sure that I overdid it this week and won't be upright for days, which is sad because there is some pretty glorious sunshine out there right now.
Crap, I just realized that Easter is on Sunday and the bunny might not have anything to put in the baskets...do you put the husband in charge of this project? Hmmm...not sure about that prospect. After all, he did get a tattoo the last time he was left to his own devices.
Friday, March 8, 2013
What Week Was This?
One of the hardest things about chemo is that you have to get up and get ready every week knowing what you are in for: a long day of BORING, being poked and prodded, and then all the icky side effects that are headed your way in the days to come. Weeks start to blend together and all look alike.
Today is another chemo day, but I'm not really sure which one this is as I'm sitting in this chair. Blame it on chemo brain, blame it on the fact that I am completely over this whole process. I think this is week 13? Yeah, let's run with that..."Lucky 13" it is!
It's actually not a bad day, all things considered.
(1) The view from the window is sunny (though with some encouragement from a friend I am going to start figuring out how to be outside in the sun while getting chemo. I think it might involve some kind of superhero battery backpack as the IV set-up requires electrical...or a REALLY long extension cord).
(2) Keith is on his way back here with my lunch. I really should be a paid Subway endorser because that's all I eat.
(3) I actually LOST THREE POUNDS this week. See several of my previous posts for my issues with that. Now I have proof that it was the steroids. Yeah for week 2 without them!
Now, if only the port would cooperate and give up blood for the labs so we could get this process started, the day would be complete. This is the third week in a row that they've had issues with the port, so I fear what this means for future weeks. But, we'll think about that another time.
And I clearly might have to write a post about how to behave if you are a visitor in the hospital since there is a VERY ANNOYING GUY talking LOUDLY on his cell phone outside my infusion room. I appreciate that he moved away from his friend/family member's "room" when taking his "very important call." However, he moved right outside MY room (which, keep in mind, doesn't have a door) to talk...for a long time...and I have headphones on and can still hear him. I am considering running him over with my IV stand. Bad. Hospital. Etiquette. Monumentally Bad!
Today is another chemo day, but I'm not really sure which one this is as I'm sitting in this chair. Blame it on chemo brain, blame it on the fact that I am completely over this whole process. I think this is week 13? Yeah, let's run with that..."Lucky 13" it is!
It's actually not a bad day, all things considered.
(1) The view from the window is sunny (though with some encouragement from a friend I am going to start figuring out how to be outside in the sun while getting chemo. I think it might involve some kind of superhero battery backpack as the IV set-up requires electrical...or a REALLY long extension cord).
(2) Keith is on his way back here with my lunch. I really should be a paid Subway endorser because that's all I eat.
(3) I actually LOST THREE POUNDS this week. See several of my previous posts for my issues with that. Now I have proof that it was the steroids. Yeah for week 2 without them!
Now, if only the port would cooperate and give up blood for the labs so we could get this process started, the day would be complete. This is the third week in a row that they've had issues with the port, so I fear what this means for future weeks. But, we'll think about that another time.
And I clearly might have to write a post about how to behave if you are a visitor in the hospital since there is a VERY ANNOYING GUY talking LOUDLY on his cell phone outside my infusion room. I appreciate that he moved away from his friend/family member's "room" when taking his "very important call." However, he moved right outside MY room (which, keep in mind, doesn't have a door) to talk...for a long time...and I have headphones on and can still hear him. I am considering running him over with my IV stand. Bad. Hospital. Etiquette. Monumentally Bad!
Wednesday, February 13, 2013
Cancer Pros and Cons
As I'm starting my second stage of chemo, I thought I would take a moment to reflect on the Pros and Cons of this cancer diagnosis...
Cons: These seem kind of obvious, so I'll focus on the ones that annoy me the most right now, and not on the life-altering, you could die ones. Because I'm pretty sure that you could imagine what those are. And I also won't bring up the kind of gross side effects that you don't really want to hear about. There are many posts that I write but never post here, guess you'll have to wait for the book. (Which would be cool, and which AJ wants to help me write).
(1) I'm calling it Perma-cold. I'm not sure if it's the chemo or the steroids (yes, I'm on a mission to blame everything on the steroids...just keep reading), but my nose is ALWAYS running. I have resorted to carrying Kleenex in my purse, in my car, there are boxes on the nightstand, in the kitchen, and on the family room coffee table. I even bring my own box of Kleenex to chemo because the tissue they supply is worse than sandpaper. "Don't leave home without it" has taken on new meaning.
(2) Migraines. Again, I blame the steroids, but there's the possibility that this was the A/C chemo making me feel like this. Let's hope, because after the last round I was laying in the dark with a killer migraine for 6 days.
(3) Insomnia. Blaming the steroids again. The one nausea med (yes, there's more than one) that I was given was supposed to help with that, but it doesn't even come close. And since it's probably not a good idea to take the whole bottle, I have finally been convinced to get a prescription for Ambien to see if that helps. The doctor says I might actually start feeling better if I get more than 3 hours of sleep at a time. What? You mean 5 hours of sleep a day, and not all at once, is a bad thing? Whoops. Of course, I still haven't stopped by the pharmacy to fill said prescription, so it might be awhile until I let you know how it's working.
(4) Weight gain. I don't care if I'm a sloth, it's got to be the steroids. I also don't care that no one else seems concerned over my gaining 5 pounds in 5 weeks. But I only have one pair of pants that fit right now. I'm going to need to buy new clothes if this keeps up. Can you imagine? Forget "fat pants," I'm going to need "cancer pants." Terrific!
(5) Chemo brain. And it's so bad right now that I almost forgot to mention it. If you aren't familiar with chemo brain, this is a fun side effect that basically makes you stupid. Or at least makes you feel stupid. You forget things, like what you were just about to type, and you definitely can't remember the right words at the right times. It's a little like dementia. I think I've only forgotten each child's name once or twice, but there are many times where I look like a lunatic waving my arms around or snapping my fingers hoping that this will help me come up with the right word. And I've been told that this takes AWHILE to go away, and is sometimes permanent. God help me. This one is my biggest fear because it's pretty hard to teach when you can't remember what you want to teach them.
(6) Hot flashes. I hate to say it out loud, but I think this is chemo-induced menopause. Shhhh! Don't want to think it. Moving on...
(7) Taste bud obliteration. This sucks! God forbid if you ever have to go through chemotherapy, PLEASE call me first so I can tell you how not to have this happen to you. I am slooooowly getting them back, little by little, so it's possible this isn't permanent, but still a monumental pain in the ass.
Pros: Yes, there actually are some. Though, let's be honest, the cons definitely outweigh the good things. But if pressed, there are a few "perks" if that's the word you want to use.
(1) I'm saving money on shampoo, haircuts, and coloring the horrible gray. Although it's possible the cost of the wigs offsets this, but we won't think about that. Mainly because I'm really fond of the Katy Perry wig now and might just be wearing it for every school picture day from here on out.
(2) I don't have to clean up kid puke. When the daughter had the FLU with a capital "F" last weekend, I didn't have to clean it up. Or come anywhere near her. Now, I felt bad about not being able to comfort her (and that she was basically locked in her room), but didn't really miss cleaning up kid puke.
(3) I don't have to go to the dentist while I'm going through treatment. I think there's several reasons for this, but I don't really care. I just heard the "no dentist" part and that was good enough for me. Oh, and I don't have to floss either, but who's kidding who? I don't really floss anyway. Shhhh!
(4) No shaving my legs. Even though the hair on my legs was the last to fall out (and by falling out, I mean that I finally shaved it off), it has not grown back. Cutting this and the shampoo out of the morning regimen means more time to sleep in. Sadly for my energy-conscious husband, this does not mean less time in the shower because I've discovered it is nice to just stand (sit) in the warm water for as long as possible.
(5) People are awesome. It's nice to see this in action, and I do on a regular basis. So many people taking care of me and my family...in big and small ways...we are so grateful!
Cons: These seem kind of obvious, so I'll focus on the ones that annoy me the most right now, and not on the life-altering, you could die ones. Because I'm pretty sure that you could imagine what those are. And I also won't bring up the kind of gross side effects that you don't really want to hear about. There are many posts that I write but never post here, guess you'll have to wait for the book. (Which would be cool, and which AJ wants to help me write).
(1) I'm calling it Perma-cold. I'm not sure if it's the chemo or the steroids (yes, I'm on a mission to blame everything on the steroids...just keep reading), but my nose is ALWAYS running. I have resorted to carrying Kleenex in my purse, in my car, there are boxes on the nightstand, in the kitchen, and on the family room coffee table. I even bring my own box of Kleenex to chemo because the tissue they supply is worse than sandpaper. "Don't leave home without it" has taken on new meaning.
(2) Migraines. Again, I blame the steroids, but there's the possibility that this was the A/C chemo making me feel like this. Let's hope, because after the last round I was laying in the dark with a killer migraine for 6 days.
(3) Insomnia. Blaming the steroids again. The one nausea med (yes, there's more than one) that I was given was supposed to help with that, but it doesn't even come close. And since it's probably not a good idea to take the whole bottle, I have finally been convinced to get a prescription for Ambien to see if that helps. The doctor says I might actually start feeling better if I get more than 3 hours of sleep at a time. What? You mean 5 hours of sleep a day, and not all at once, is a bad thing? Whoops. Of course, I still haven't stopped by the pharmacy to fill said prescription, so it might be awhile until I let you know how it's working.
(4) Weight gain. I don't care if I'm a sloth, it's got to be the steroids. I also don't care that no one else seems concerned over my gaining 5 pounds in 5 weeks. But I only have one pair of pants that fit right now. I'm going to need to buy new clothes if this keeps up. Can you imagine? Forget "fat pants," I'm going to need "cancer pants." Terrific!
(5) Chemo brain. And it's so bad right now that I almost forgot to mention it. If you aren't familiar with chemo brain, this is a fun side effect that basically makes you stupid. Or at least makes you feel stupid. You forget things, like what you were just about to type, and you definitely can't remember the right words at the right times. It's a little like dementia. I think I've only forgotten each child's name once or twice, but there are many times where I look like a lunatic waving my arms around or snapping my fingers hoping that this will help me come up with the right word. And I've been told that this takes AWHILE to go away, and is sometimes permanent. God help me. This one is my biggest fear because it's pretty hard to teach when you can't remember what you want to teach them.
(6) Hot flashes. I hate to say it out loud, but I think this is chemo-induced menopause. Shhhh! Don't want to think it. Moving on...
(7) Taste bud obliteration. This sucks! God forbid if you ever have to go through chemotherapy, PLEASE call me first so I can tell you how not to have this happen to you. I am slooooowly getting them back, little by little, so it's possible this isn't permanent, but still a monumental pain in the ass.
Pros: Yes, there actually are some. Though, let's be honest, the cons definitely outweigh the good things. But if pressed, there are a few "perks" if that's the word you want to use.
(1) I'm saving money on shampoo, haircuts, and coloring the horrible gray. Although it's possible the cost of the wigs offsets this, but we won't think about that. Mainly because I'm really fond of the Katy Perry wig now and might just be wearing it for every school picture day from here on out.
(2) I don't have to clean up kid puke. When the daughter had the FLU with a capital "F" last weekend, I didn't have to clean it up. Or come anywhere near her. Now, I felt bad about not being able to comfort her (and that she was basically locked in her room), but didn't really miss cleaning up kid puke.
(3) I don't have to go to the dentist while I'm going through treatment. I think there's several reasons for this, but I don't really care. I just heard the "no dentist" part and that was good enough for me. Oh, and I don't have to floss either, but who's kidding who? I don't really floss anyway. Shhhh!
(4) No shaving my legs. Even though the hair on my legs was the last to fall out (and by falling out, I mean that I finally shaved it off), it has not grown back. Cutting this and the shampoo out of the morning regimen means more time to sleep in. Sadly for my energy-conscious husband, this does not mean less time in the shower because I've discovered it is nice to just stand (sit) in the warm water for as long as possible.
(5) People are awesome. It's nice to see this in action, and I do on a regular basis. So many people taking care of me and my family...in big and small ways...we are so grateful!
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