It's now day #4 of me being bald--without hair--feeling like I look like an alien every time I look in the mirror (when I'm not wearing my wig that is).
I've gotten so many email and voice mail messages and comments on this blog that have said that I don't look weird or funny and that my hair doesn't define me--and I really and truly appreciate all those sentiments. Especially because I do feel like one of those hairless cats right now (and those hairless cats have always freaked me out). And if any of you were going through this I'd say the same thing: beauty is within. The external stuff is just that, external. And this is temporary--it will grow back.
Yet, I feel ugly. Or maybe more precisely, I don't feel good about myself. Which has to do with not having hair but I think it also has to do with the reality of the cancer sort've sitting with me. And the reality of my chemo treatment, which is really taxing. While I think the folks at Lineberger are right in saying that the first round would be an indication of how I'd do with subsequent rounds, I also think (or wonder) about the cumulative effects of the chemo in my body. Because I'm definitely tired--I feel more tired this time than I did the last time. Of course, the fact that I have a low level depression going on probably doesn't help. But I also still have a fair bit of nausea, and I was expecting this to be subsiding more by day #7. So I do wonder what rounds #3 and #4 will be like. And there is a part of me that feels like this should be a case of mind over matter. That I need to just tell myself that I'm fine and I'll be fine and that's that. I can't not go to yoga or keep sleeping or watch movies all day long.
I think I make a bad sick person. Because I'm antsy to actually do work, as crazy as that sounds. I don't want to feel tired and queasy. I want to have my normal energy level and I want to be reading and writing and thinking about my book project. And planning my syllabus for next semester. And I want to turn my tenure file in and have that over with.
And maybe, what I should be doing, is to let myself just be with all of this. Maybe that's what the meltdown was for. And maybe the stuff about me not feeling good about myself, physically (in terms of my external features) and bodily (in terms of my internal cellular distress because of the chemo) and emotionally (because of all the disturbances I'm dealing with) is to give myself time to just BE with ME. And to be OK with being bald. And to be OK (as much as I can be OK) with going through the chemo. And to be OK with what this means in terms of my energy level and not feeling like myself. Because I don't feel like myself. I don't look like myself.
But maybe that's OK for now. To be sad. To feel a bit ugly. And to be OK with those things and to just figure out, hour by hour, day by day, what is going to make me feel good again. Maybe this is my time to slow down and sit with myself because I can't really do anything else or be anywhere else. So maybe I just need to be.
And on that note, I'm actually going to leave you with something pretty awesome that my friend Kathy by way of another friend Becky sent to me (all you lit folks should LOVE this):
Wednesday, June 30, 2010
Monday, June 28, 2010
Sunday, June 27, 2010
THE MELTDOWN
Yesterday afternoon I had the biggest meltdown that I've had since receiving my cancer diagnosis. I know that a lot of folks have commented on how brave I am. Or how stoic. Or strong. And in the face of my initial diagnosis, I did seem to be all these things. It was like a door closed when I heard the news "positive for breast cancer" and I immediately went into business mode, trying to learn the jargon, figure out what I needed to do immediately in terms of surgery, treatment options, who I should talk to, how I should break the news to people, when I should tell my grad students, how this would interfere with the wedding shower, with the wedding, with my trip to Okracoke.
I have been business-like throughout most of the diagnosis and surgery and treatment, so much so that I know that folks have been worried about whether I'm in touch with my emotions or whether I'm in denial about all of this. But I knew (and those closest to me know) that this is my M.O. When faced with news of a particularly tragic nature (the death of my favorite uncle, for example) I do not cry--I figure out what I need to do. And then at an unexpected moment, I have my meltdown.
Now, I have had minor breakdowns along the way. Who wouldn't?! There's SO MUCH TO PROCESS. The meeting about the chemotherapy alone was like a clusterfuck in my head--feeling like every part of my female sexuality and feminine identity was being attacked and compromised simultaneously (click here for the blog entry on that particular subject). And it's just stressful--hearing statistics about survival rates and rates of recurrence and all the horrible side effects of chemo and the eventual bi-lateral mastectomy I will have to have. If you try to hold it all in your head at once, you feel like your brain (or heart) is going to explode. So since I'm great at compartementalizing, I've just been letting in what I need to let in, in order to get through on a day by day, week by week basis.
Yet I suspected that the day that would be hardest--the time that would truly have me at the end of my limits, would be today. Because today, I'm going to have Matthew shave of all my hair. Today is when I become bald. Today is when there is no masking the fact that I am a cancer patient. I have cancer.
I know my hair will grow back--many people have tried to reassure me of this fact--I've read books that have reassured me of this fact. And it is, somewhat, reassuring. But that's not all that has me freaked out right now. It's the mark of baldness that means you HAVE CANCER. I mean, of course not all people who are bald have cancer, but here's where gender norms really come into play. A bald man may just have elected to be bald or have male pattern baldness or perhaps he has cancer.
A woman who is bald in public? She has cancer. Or alopecia (the loss of hair that is not going to come back). Or perhaps she is just a woman who is very comfortable in her body and likes to have her head shaved. But seriously? Most women who are bald in public are iconoclasts--and it is one of the biggest badges, markers, and signs that screams I HAVE CANCER.
And while verbally I may be comfortable telling people that I have breast cancer and am going through chemotherapy, it's another thing to have my head betray me through its loss of hair--to have others see me as a cancer patient first rather than my own control and confirmation of my status--my ability to hide or mask my cancer and only reveal my situation when I want to reveal it.
Which is I know what the wigs are for. I mean, they are there for my vanity--I picked them out because I thought they would flatter me--and it's why I particularly love my strawberry syrup wig. But these wigs are also a necessary emotional and mental buffer against me and the world. They are part of my arsenal--part of the protection of my very being--the part that is really terrified with what it means to have cancer and be going through chemo and who has to look ahead, at some point, to a very debilitating surgery that will remove both my breasts and send me to a physical therapist to learn how to be in my body without my breasts.
All of this is anxiety producing and strikes at the most vulnerable part of me. And I know that this is now the public face I show with friends and family and on this blog. But like every other human on this planet, I am fully of the soft mushy stuff that gets frightened and scared and feels absolutely vulnerable and who can't keep it all inside--can't just be strong and stoic and brave.
So I'm not. Not yesterday afternoon when I cried, hysterically, for well over half an hour, just sobbing over and over again, with Matthew by my side, that I didn't want to lose my hair and I was scared and I didn't want to have cancer. And this morning, when I took a shower and tried to wash my hair, as I was lathering up, I literally had clumps of hair in each hand, and I started to leave a big mound of it in the corner of the shower, so that when I was finally done washing my hair and rinsing all the hair off my body, I'd say I left about a 1/4 - 1/3 of my hair in the bathtub. And when I went to dry my hair, as gingerly and tenderly as possible, I found clumps of my hair within the towel. I look absolutely ghastly right now because I have bit patches of hair missing from my scalp. And I called my parents and just cried and cried on the phone with them long distance, because I feel like my heart is breaking. Because I don't want this to be real--and the loss of my hair, the fact that it's coming out in such big clumps, the reality of having it shaved off this afternoon, makes it all very REAL. It makes this cancer absolutely real.
So I sit and wait. Matthew will be off work by 11am and we'll have lunch with Mai, who has agreed to be our official photographer (and I picked Mai because I knew I'd be comfortable having a break down in front of her--you can only pick people you can go really low with and I trust Mai to be able to go really low) and in a few hours I will be bald.
And I'm just incredibly sad. Because I LOVE my hair--I've always loved my hair. I've always felt that my hair was one of my better features and always tried to take care of my hair and always get a great hair cut. But beyond all the vain things associated with my hair, I'm just incredibly sad because this all feels way too real. And I wish it wasn't.
I have been business-like throughout most of the diagnosis and surgery and treatment, so much so that I know that folks have been worried about whether I'm in touch with my emotions or whether I'm in denial about all of this. But I knew (and those closest to me know) that this is my M.O. When faced with news of a particularly tragic nature (the death of my favorite uncle, for example) I do not cry--I figure out what I need to do. And then at an unexpected moment, I have my meltdown.
Now, I have had minor breakdowns along the way. Who wouldn't?! There's SO MUCH TO PROCESS. The meeting about the chemotherapy alone was like a clusterfuck in my head--feeling like every part of my female sexuality and feminine identity was being attacked and compromised simultaneously (click here for the blog entry on that particular subject). And it's just stressful--hearing statistics about survival rates and rates of recurrence and all the horrible side effects of chemo and the eventual bi-lateral mastectomy I will have to have. If you try to hold it all in your head at once, you feel like your brain (or heart) is going to explode. So since I'm great at compartementalizing, I've just been letting in what I need to let in, in order to get through on a day by day, week by week basis.
Yet I suspected that the day that would be hardest--the time that would truly have me at the end of my limits, would be today. Because today, I'm going to have Matthew shave of all my hair. Today is when I become bald. Today is when there is no masking the fact that I am a cancer patient. I have cancer.
I know my hair will grow back--many people have tried to reassure me of this fact--I've read books that have reassured me of this fact. And it is, somewhat, reassuring. But that's not all that has me freaked out right now. It's the mark of baldness that means you HAVE CANCER. I mean, of course not all people who are bald have cancer, but here's where gender norms really come into play. A bald man may just have elected to be bald or have male pattern baldness or perhaps he has cancer.
A woman who is bald in public? She has cancer. Or alopecia (the loss of hair that is not going to come back). Or perhaps she is just a woman who is very comfortable in her body and likes to have her head shaved. But seriously? Most women who are bald in public are iconoclasts--and it is one of the biggest badges, markers, and signs that screams I HAVE CANCER.
And while verbally I may be comfortable telling people that I have breast cancer and am going through chemotherapy, it's another thing to have my head betray me through its loss of hair--to have others see me as a cancer patient first rather than my own control and confirmation of my status--my ability to hide or mask my cancer and only reveal my situation when I want to reveal it.
Which is I know what the wigs are for. I mean, they are there for my vanity--I picked them out because I thought they would flatter me--and it's why I particularly love my strawberry syrup wig. But these wigs are also a necessary emotional and mental buffer against me and the world. They are part of my arsenal--part of the protection of my very being--the part that is really terrified with what it means to have cancer and be going through chemo and who has to look ahead, at some point, to a very debilitating surgery that will remove both my breasts and send me to a physical therapist to learn how to be in my body without my breasts.
All of this is anxiety producing and strikes at the most vulnerable part of me. And I know that this is now the public face I show with friends and family and on this blog. But like every other human on this planet, I am fully of the soft mushy stuff that gets frightened and scared and feels absolutely vulnerable and who can't keep it all inside--can't just be strong and stoic and brave.
So I'm not. Not yesterday afternoon when I cried, hysterically, for well over half an hour, just sobbing over and over again, with Matthew by my side, that I didn't want to lose my hair and I was scared and I didn't want to have cancer. And this morning, when I took a shower and tried to wash my hair, as I was lathering up, I literally had clumps of hair in each hand, and I started to leave a big mound of it in the corner of the shower, so that when I was finally done washing my hair and rinsing all the hair off my body, I'd say I left about a 1/4 - 1/3 of my hair in the bathtub. And when I went to dry my hair, as gingerly and tenderly as possible, I found clumps of my hair within the towel. I look absolutely ghastly right now because I have bit patches of hair missing from my scalp. And I called my parents and just cried and cried on the phone with them long distance, because I feel like my heart is breaking. Because I don't want this to be real--and the loss of my hair, the fact that it's coming out in such big clumps, the reality of having it shaved off this afternoon, makes it all very REAL. It makes this cancer absolutely real.
So I sit and wait. Matthew will be off work by 11am and we'll have lunch with Mai, who has agreed to be our official photographer (and I picked Mai because I knew I'd be comfortable having a break down in front of her--you can only pick people you can go really low with and I trust Mai to be able to go really low) and in a few hours I will be bald.
And I'm just incredibly sad. Because I LOVE my hair--I've always loved my hair. I've always felt that my hair was one of my better features and always tried to take care of my hair and always get a great hair cut. But beyond all the vain things associated with my hair, I'm just incredibly sad because this all feels way too real. And I wish it wasn't.
Thursday, June 24, 2010
Live from Chemo Chair #26 -- and so it begins (again)
[No new medical updates--just more of the same about my chemo treatment, but read on if you want to know my musings as I sit and get this second round of the AC cocktail]
So I've been here since 10am, in chemo chair #26 (it's now almost 1pm). I've had my anti-nausea medicine, the "A" part of my AC chemo cocktail, and now I'm just waiting for the "C" part to be dripping into my iv line.
When I got here in the morning I felt great--I mean, not great about having to come to chemo, but great in terms of no side effects/symptoms, no fatigue or diziness. I felt like my normal, healthy self.
And now?
Already I can feel my brain fog over and a slight headache come on. And my body feels heavy--like it's filling up with lead. And my stomach? Lets not even start to talk about my stomach (which is up to it's old queasy business--the pharmacist, Chris, confirmed that if I were NOT on the regimen of anti-nausea meds, I'd certainly be throwing up, so the queasiness may be something I am just going to have to deal with while doing the AC cocktail. The good news is that the Taxol apparently isn't as hard on the system, nausea wise--there are other mean side effects that Taxol has up its sleeve, like joint and muscle pain and neuropathy--but we've got time to experience all that). And, of course, there's that horrible taste that has returned.
(sigh)
I have a new nurse this time, Amy, who is also very efficient, no nonsense, and very friendly/reassuring. Stacy is assisting her (this is her 5th day on the chemo ward--she's brand new here from Omaha), and Julie, the nurse I had last time, came by to say hi and see how I was doing. And in my appointment with Dr. Carey, Delma came by to say hi and I met Dr. Carey's nurse practitioner, who looks and sounds a lot like Heather Graham.
Anyway, the cycle begins anew. I lost 5 lbs from my last chemo--so if this pattern holds, I'll be 20 lb lighter when I'm done with the AC cocktail portion of my chemo. And the first 5 days will be hard, but then it'll get better. Plus, I have high hopes for the acupuncture that I'm now doing!
I had my first appointment with Tory (who specializes in working with people who have cancer and are going through chemo) at Triangle Acupuncture. She said that my symptoms wouldn't go away but that hopefully the side effects would be lessened through the treatment. It was really trippy--my first time with the needles--and I have to say that I liked it. First, it was just very relaxing--the needles are so small and thin, you really don't feel them at all. And then you lie there in this room semi-lit room with soothing music playing, and I just fell asleep. But as I was drifting off, I could feel all these tingling sensations through different parts of my body, places that were NOT the parts where she had inserted a needle. For example, I thought that I was feeling a bit of a pinching feeling in my right kneecap, so I mentioned this to Tory as she was inserting needles in my left leg. She touched the inside of my right calf and asked if this was what was pinching, but I said, no, it was definitely my knee cap. And then she told me she hadn't inserted a needle in my kneecap--that what I was experiencing was deferred pain--and so she pulled the needle out a bit from my calf, which lessened the effect, and she said that it was actually a good sign because it meant that my channels were open and it was working.
I have to say, I was tingling for a good half hour after my appointment. So cross your fingers for me--I really hope it helps with the queasiness and dizziness.
Now for the sad news: yesterday I scratched my head and a clump of my hair came out in my hand. Not a huge clump, just a few dozen strands. But when I saw them come out in my hand, I put my book down and just stared at them. For a few minutes. And I felt my heart sink. And I felt my stomach just lurch. And I got sad. Really sad. Really, REALLY sad. And when Matthew got home I told him and he hugged me and then I promptly went upstairs to bed and stared at the ceiling. Because I think this was the moment when my FEELINGS about everything that is happening to me sort've caught up to me. Because I DO NOT WANT MY HAIR TO FALL OUT AND I AM TOTALLY FREAKED OUT BY THE FACT THAT IT IS GOING TO HAPPEN AND I'M REALLY UNPREPARED FOR THIS TO HAPPEN EVEN THOUGH I HAVE THESE COOL WIGS AND I KNOW MY HAIR WILL GROW OUT.
I mean, intellectually I'm OK with it all. I know that all of this is necessary to give me the best odds of remission and recovery. But the reality of having my hair fall out? That is just something I'm really unprepared for. And I have been telling folks, who have called or written or stopped by that I'm dealing with everything fine but that the minute that my hair starts to fall out I'll probably start to lose it.
Well, that time has come. I think it's a manageable kind of freaking-out--in other words, it's not preventing me from functioning or coming to my chemo appointment. And I've tried to be nice and cordial to all the staff here because they are nice and cordial and professional with me. But on the inside? I'm sort've freaking out--worried to touch my hair--worried to lie down, because each time I do, I see a few stray hairs lying on the pillow. And when I showered this morning, it was really distressing because I shed a lot of hair in the shower and then while toweling off. And it just makes me so incredibly sad.
Anyway, that's what's new with me. I'll probably be returning phone and email messages very slowly over the next few days, if anyone intends to write or call. You can always try Matthew--he's good as a go-between and can give people the inside scoop about what's going on at the Grady-Ho homestead. I'm just not sure what to do about the hair thing. I suppose I need to consider when I should think about shaving it off--balancing how freaked out I am each time a new clump comes out versus how freaked out I'll be to actually have my head shaved.
(sigh)
Hope everyone is well! And take care of your hair!
So I've been here since 10am, in chemo chair #26 (it's now almost 1pm). I've had my anti-nausea medicine, the "A" part of my AC chemo cocktail, and now I'm just waiting for the "C" part to be dripping into my iv line.
When I got here in the morning I felt great--I mean, not great about having to come to chemo, but great in terms of no side effects/symptoms, no fatigue or diziness. I felt like my normal, healthy self.
And now?
Already I can feel my brain fog over and a slight headache come on. And my body feels heavy--like it's filling up with lead. And my stomach? Lets not even start to talk about my stomach (which is up to it's old queasy business--the pharmacist, Chris, confirmed that if I were NOT on the regimen of anti-nausea meds, I'd certainly be throwing up, so the queasiness may be something I am just going to have to deal with while doing the AC cocktail. The good news is that the Taxol apparently isn't as hard on the system, nausea wise--there are other mean side effects that Taxol has up its sleeve, like joint and muscle pain and neuropathy--but we've got time to experience all that). And, of course, there's that horrible taste that has returned.
(sigh)
I have a new nurse this time, Amy, who is also very efficient, no nonsense, and very friendly/reassuring. Stacy is assisting her (this is her 5th day on the chemo ward--she's brand new here from Omaha), and Julie, the nurse I had last time, came by to say hi and see how I was doing. And in my appointment with Dr. Carey, Delma came by to say hi and I met Dr. Carey's nurse practitioner, who looks and sounds a lot like Heather Graham.
Anyway, the cycle begins anew. I lost 5 lbs from my last chemo--so if this pattern holds, I'll be 20 lb lighter when I'm done with the AC cocktail portion of my chemo. And the first 5 days will be hard, but then it'll get better. Plus, I have high hopes for the acupuncture that I'm now doing!
I had my first appointment with Tory (who specializes in working with people who have cancer and are going through chemo) at Triangle Acupuncture. She said that my symptoms wouldn't go away but that hopefully the side effects would be lessened through the treatment. It was really trippy--my first time with the needles--and I have to say that I liked it. First, it was just very relaxing--the needles are so small and thin, you really don't feel them at all. And then you lie there in this room semi-lit room with soothing music playing, and I just fell asleep. But as I was drifting off, I could feel all these tingling sensations through different parts of my body, places that were NOT the parts where she had inserted a needle. For example, I thought that I was feeling a bit of a pinching feeling in my right kneecap, so I mentioned this to Tory as she was inserting needles in my left leg. She touched the inside of my right calf and asked if this was what was pinching, but I said, no, it was definitely my knee cap. And then she told me she hadn't inserted a needle in my kneecap--that what I was experiencing was deferred pain--and so she pulled the needle out a bit from my calf, which lessened the effect, and she said that it was actually a good sign because it meant that my channels were open and it was working.
I have to say, I was tingling for a good half hour after my appointment. So cross your fingers for me--I really hope it helps with the queasiness and dizziness.
Now for the sad news: yesterday I scratched my head and a clump of my hair came out in my hand. Not a huge clump, just a few dozen strands. But when I saw them come out in my hand, I put my book down and just stared at them. For a few minutes. And I felt my heart sink. And I felt my stomach just lurch. And I got sad. Really sad. Really, REALLY sad. And when Matthew got home I told him and he hugged me and then I promptly went upstairs to bed and stared at the ceiling. Because I think this was the moment when my FEELINGS about everything that is happening to me sort've caught up to me. Because I DO NOT WANT MY HAIR TO FALL OUT AND I AM TOTALLY FREAKED OUT BY THE FACT THAT IT IS GOING TO HAPPEN AND I'M REALLY UNPREPARED FOR THIS TO HAPPEN EVEN THOUGH I HAVE THESE COOL WIGS AND I KNOW MY HAIR WILL GROW OUT.
I mean, intellectually I'm OK with it all. I know that all of this is necessary to give me the best odds of remission and recovery. But the reality of having my hair fall out? That is just something I'm really unprepared for. And I have been telling folks, who have called or written or stopped by that I'm dealing with everything fine but that the minute that my hair starts to fall out I'll probably start to lose it.
Well, that time has come. I think it's a manageable kind of freaking-out--in other words, it's not preventing me from functioning or coming to my chemo appointment. And I've tried to be nice and cordial to all the staff here because they are nice and cordial and professional with me. But on the inside? I'm sort've freaking out--worried to touch my hair--worried to lie down, because each time I do, I see a few stray hairs lying on the pillow. And when I showered this morning, it was really distressing because I shed a lot of hair in the shower and then while toweling off. And it just makes me so incredibly sad.
Anyway, that's what's new with me. I'll probably be returning phone and email messages very slowly over the next few days, if anyone intends to write or call. You can always try Matthew--he's good as a go-between and can give people the inside scoop about what's going on at the Grady-Ho homestead. I'm just not sure what to do about the hair thing. I suppose I need to consider when I should think about shaving it off--balancing how freaked out I am each time a new clump comes out versus how freaked out I'll be to actually have my head shaved.
(sigh)
Hope everyone is well! And take care of your hair!
Monday, June 21, 2010
It's back! My appetite!
Today has been the best day I've had since I started chemo on Thursday, June 10. This is technically day 12 of chemo and again, I feel like a textbook case: the first 5 days are the hardest and my symptoms are the most severe and the following days I feel better and better until the last few days I actually start to feel like my old self again when BAM! I start the cycle all over again.
(sigh)
I hope I do run true to course, because feeling crappy for 5 days out of 14 isn't so bad. Although I suppose I still have to deal with decreased energy (I basically spent Saturday lying around the house--on my couch, curled up in my arm chair, napping on the futon in my home office, and finally in bed by 9pm, sound asleep), but the good news seems to be that my taste buds return back to normal around day 12.
Because I HAVE MY APPETITE BACK!
I have to eat smaller portions (odd, not sure why) but the good news is definitely that food tastes good to me again. Which is such a relief! I mean, ice cream that tastes like cardboard is just a sad, Sad, SAD world. But I suppose for a week at a time, I'll just deal with that (although, there are always Massa Organic almonds to get me through the bad week, as well as Trader Joe's lentil-potato snacks and rice crackers--these are my staples during the bad days--as well as everything ginger).
Today I went to yoga and had no problem with any of the poses, and I've also managed to walk a mile every morning--the one constant during this treatment (exercise is actually really helpful in dealing with the chemo, at least I think so--although I definitely can't push myself like I normally do--a mile or mile and a half is just about right for me).
So that's the latest update from me. I'll write again on Thursday when I'm back at the Lineberger Center, and I'm sure I'll be writing to all of you when my hair falls out...I should have another 10 days before that happens (sigh). Anyway, I hope everyone reading this is having a good day, and if you're not, then I hope it gets better very soon. And most importantly, I hope that you enjoy a good meal today--and savor every bite. I think I've neglected to appreciate my taste buds in the past and I'm just SO GRATEFUL for them right now that I'm going to savor every meal that I can taste until Thursday!
(sigh)
I hope I do run true to course, because feeling crappy for 5 days out of 14 isn't so bad. Although I suppose I still have to deal with decreased energy (I basically spent Saturday lying around the house--on my couch, curled up in my arm chair, napping on the futon in my home office, and finally in bed by 9pm, sound asleep), but the good news seems to be that my taste buds return back to normal around day 12.
Because I HAVE MY APPETITE BACK!
I have to eat smaller portions (odd, not sure why) but the good news is definitely that food tastes good to me again. Which is such a relief! I mean, ice cream that tastes like cardboard is just a sad, Sad, SAD world. But I suppose for a week at a time, I'll just deal with that (although, there are always Massa Organic almonds to get me through the bad week, as well as Trader Joe's lentil-potato snacks and rice crackers--these are my staples during the bad days--as well as everything ginger).
Today I went to yoga and had no problem with any of the poses, and I've also managed to walk a mile every morning--the one constant during this treatment (exercise is actually really helpful in dealing with the chemo, at least I think so--although I definitely can't push myself like I normally do--a mile or mile and a half is just about right for me).
So that's the latest update from me. I'll write again on Thursday when I'm back at the Lineberger Center, and I'm sure I'll be writing to all of you when my hair falls out...I should have another 10 days before that happens (sigh). Anyway, I hope everyone reading this is having a good day, and if you're not, then I hope it gets better very soon. And most importantly, I hope that you enjoy a good meal today--and savor every bite. I think I've neglected to appreciate my taste buds in the past and I'm just SO GRATEFUL for them right now that I'm going to savor every meal that I can taste until Thursday!
Thursday, June 17, 2010
It's been a week since my first chemo and I'm feeling...
Fine actually. Today was a good day--I had somewhat of an appetite and my energy level is good. However, I should qualify this. Here are some constants in my life post-chemo:
*A yucky aftertaste in my mouth. Sometimes it is stronger than at other times--sometimes it tastes metallic, at other times, it's just this weird film/off taste that is a constant presence in my mouth. I sometimes will suck on a lozenge or candy or will gargle with mouthwash or brush my teeth and tongue, just to get some temporary relief, but it is a constant presence in my mouth, this aftertaste--which I'm sure is contributing to my lack of appetite/change in taste buds.
*Stomach issues. Right now it's mild--in the sense that I am aware that I have a stomach. I know that sounds odd, but I want you to stop and think about the last time you thought about your stomach. It was probably either when you were last hungry or when your stomach was last upset after eating something or experiencing motion sickness. For me, I am constantly aware of my stomach and it's various states of queasiness, from the very mild (my current state) to the downright rocky/revolting state (which is when I was at my worse).
*Low energy. This has fluctuated from me being at my lowest (40% energy capacity) to today (85% capacity). But I am more tired and things take a bit longer or I need more time to rest between activities than I normally do (including simple phone calls/conversations--which may be why I'm not picking up the phone or returning phone calls from time to time).
Anyway, it's been a week since my first round of chemo, and I have another week before I go back (Thursday, June 24 at 9:30am I'm back in the infusion chair--sigh). So I'm *hoping* that the pattern, at least while I'm on the "AC" cocktail will be one bad week and one good week. I suppose once I start taxol and once the chemo starts to build up in my system that all might change, but if the next 2 months are one bad and one good week, then overall this isn't so bad--annoying and frustrating, yes. But workable.
So on that note, let me leave you with two videos, just for kicks. The first is compliments of my colleague Elyse, and it may be surprising that I'd get such a kick out of it, but first of all, it's not pink ribbons, it's pink gloves, and secondly, I love random dancing. I especially love amateur random dancing--when folks get together to create goofy dance routines or to just dance together in random places (which explains my love of the second video on this post).
Enjoy!
PINK GLOVE DANCE--Providence, St. Vincent
WHERE THE HELL IS MATT?
*A yucky aftertaste in my mouth. Sometimes it is stronger than at other times--sometimes it tastes metallic, at other times, it's just this weird film/off taste that is a constant presence in my mouth. I sometimes will suck on a lozenge or candy or will gargle with mouthwash or brush my teeth and tongue, just to get some temporary relief, but it is a constant presence in my mouth, this aftertaste--which I'm sure is contributing to my lack of appetite/change in taste buds.
*Stomach issues. Right now it's mild--in the sense that I am aware that I have a stomach. I know that sounds odd, but I want you to stop and think about the last time you thought about your stomach. It was probably either when you were last hungry or when your stomach was last upset after eating something or experiencing motion sickness. For me, I am constantly aware of my stomach and it's various states of queasiness, from the very mild (my current state) to the downright rocky/revolting state (which is when I was at my worse).
*Low energy. This has fluctuated from me being at my lowest (40% energy capacity) to today (85% capacity). But I am more tired and things take a bit longer or I need more time to rest between activities than I normally do (including simple phone calls/conversations--which may be why I'm not picking up the phone or returning phone calls from time to time).
Anyway, it's been a week since my first round of chemo, and I have another week before I go back (Thursday, June 24 at 9:30am I'm back in the infusion chair--sigh). So I'm *hoping* that the pattern, at least while I'm on the "AC" cocktail will be one bad week and one good week. I suppose once I start taxol and once the chemo starts to build up in my system that all might change, but if the next 2 months are one bad and one good week, then overall this isn't so bad--annoying and frustrating, yes. But workable.
So on that note, let me leave you with two videos, just for kicks. The first is compliments of my colleague Elyse, and it may be surprising that I'd get such a kick out of it, but first of all, it's not pink ribbons, it's pink gloves, and secondly, I love random dancing. I especially love amateur random dancing--when folks get together to create goofy dance routines or to just dance together in random places (which explains my love of the second video on this post).
Enjoy!
PINK GLOVE DANCE--Providence, St. Vincent
WHERE THE HELL IS MATT?
Where the Hell is Matt? (2008) from Matthew Harding on Vimeo.
Wednesday, June 16, 2010
I taste almonds!
So I know I've complained about the loss of my taste buds and the fact that I've been feeling bad lately, which has made my appetite disappear. But it's not entirely true.
I can taste almonds!
Let me clarify. It's not that I can just taste almonds, and it's not just any almonds I can taste. It's a particular kind of almond that I not only taste, I experience a profound sense of pleasure and delight because the sweetness of the nut combined with this soft, mellow roasted flavor has my senses actually stimulated so that IT TASTES GOOD!
What are these miracle almonds you ask? And where can you get some?
They are sent compliments of my friend, Greg Massa--an old college dorm mate (he lived on the floor right below mine in Santa Cruz dorm, UCSB, 1988-1989). Greg and his wife Raquel are organic farmers in Northern California and they own Massa Organics (click here for the link).
This is a picture of Greg and Raquel with their five kids on the family farm
They also have a Facebook group (click here).
When Greg heard I had cancer, he sent this wonderful gift box to me filled with a organic wheat flour, organic brown rice, almond butter, and most importantly, these yummy, yummy almonds!
Jane D. was over when I got the package and can attest to how scrumptious the almonds are (and she took one of the brochures that Greg included).
I don't know if anyone reading this is in need of some good organic brown rice, flour, or almonds, but even if you think you don't need it, let me tell you, it's SO WORTH IT--THESE ALMONDS ARE INCREDIBLE! And if I can taste and savor and take pleasure in the taste of these almonds while I'm on chemo, I can't imagine what they taste like with normal taste buds!
So thank you Greg and Raquel! I will be forever grateful for your almonds!
I can taste almonds!
Let me clarify. It's not that I can just taste almonds, and it's not just any almonds I can taste. It's a particular kind of almond that I not only taste, I experience a profound sense of pleasure and delight because the sweetness of the nut combined with this soft, mellow roasted flavor has my senses actually stimulated so that IT TASTES GOOD!
What are these miracle almonds you ask? And where can you get some?
They are sent compliments of my friend, Greg Massa--an old college dorm mate (he lived on the floor right below mine in Santa Cruz dorm, UCSB, 1988-1989). Greg and his wife Raquel are organic farmers in Northern California and they own Massa Organics (click here for the link).
This is a picture of Greg and Raquel with their five kids on the family farm
They also have a Facebook group (click here).
When Greg heard I had cancer, he sent this wonderful gift box to me filled with a organic wheat flour, organic brown rice, almond butter, and most importantly, these yummy, yummy almonds!
Jane D. was over when I got the package and can attest to how scrumptious the almonds are (and she took one of the brochures that Greg included).
I don't know if anyone reading this is in need of some good organic brown rice, flour, or almonds, but even if you think you don't need it, let me tell you, it's SO WORTH IT--THESE ALMONDS ARE INCREDIBLE! And if I can taste and savor and take pleasure in the taste of these almonds while I'm on chemo, I can't imagine what they taste like with normal taste buds!
So thank you Greg and Raquel! I will be forever grateful for your almonds!
Tuesday, June 15, 2010
Chemo sucks and I feel bad
I guess I could just end with the title of this post. But perhaps I should elaborate on why I feel bad (I don't think I need to explain why chemo sucks--the idea of poison coursing through my cells and blood stream killing off the good with the bad is freaky enough without all the side effects).
*I am still nauseous/queasy and also a bit dizzy
Let me explain further. The nurse navigator that we met with the week before chemo, lets call her Nurse Sally Sunshine, made it seem as if I would have ZERO nausea--that the anti-nausea medication that they have now is so good and there have been so many advances that I should just not have a problem with nausea at all.
Well, maybe I'm an outlier (OK, I KNOW I'm an outlier) but I am having nausea. Not enough that I'm dry heaving in a crumpled heap with Julia Roberts holding my head while I wretch into a metal bin (if you've seen the film Dying Young then you know what I'm talking about), but enough that I don't feel good--I don't have much of an appetite and my stomach is constantly queasy.
I have a call out to another nurse (this one I like very much--Delma) and I have an appointment with Triangle Acupuncture next week--I have high hopes for the acupuncture--several people have recommended it as a way to help with the side effects of chemo (it helped one of my uncles). I just with Blue Cross/Blue Shield would get with the program and help cover alternative therapies (they don't, so it's all out of pocket).
*I'm not eating.
OK, this isn't technically true--I am eating--or rather constantly nibbling in an effort to hold the nausea at bay. But I'm not really eating big meals, and I'm doing just small nibbles. And it's sad--because I LOVE TO EAT. Or rather, I love food. I still do--and this is one of the saddest consequences of the chemo--having my taste buds change and not having an appetite. I've lost 5 lbs in 5 days, which I know isn't great--this is why I'm hoping the nurse will call back and/or acupuncture will work. If anyone reading this has recommendations on things to eat and how to deal with the change in taste buds and nausea, I'm all ears/eyes.
*I'm tired.
So if you know me, you know I'm a high energy kind of person. But I have to say that since chemo started, I've been much more tired--first it was at 25% below capacity, but I'd say that today (and yesterday) it's more like 50%. The mornings are better than the afternoons--and I'm usually asleep by 9pm or 10pm. I have been able to do a mile of walking in the mornings--and that seems to help with the nausea, interestingly enough. But I'd say by about 2pm I am in need of a nap, and more to the point, the energy it takes to do just a single thing feels sapping. And I'm someone used to multi-tasking, so this is a new reality for me.
There are a few more symptoms I'm having -- like some muscle/joint aches, some intermittent stomach cramping, a bit of a headache -- that aren't helpful but aren't completely constant or that feel debilitating like these other symptoms do. When Nurse Sunshine descried the side effects, she really low-balled it--she talked about how women on chemo still work and they are still Mom's who take their kids to the park and to the movie theaters and that the life I had before chemo and things I did before chemo will be things I can do while I'm on chemo.
Well you know what? She lied!
Because I cannot possibly think about walking 18 holes of golf while carrying my clubs in this heat while on chemo. And I have no desire to go to any restaurants or eat or, or to even cook, because I can't trust my cooking with my taste buds changed. And while I do recognize that there are people who are forced due to economic circumstances to work 9-5 jobs while on chemo, it should not be something that is encouraged because I AM REALLY EXHAUSTED AND FEEL SLIGHTLY NAUSEOUS 24/7. And this is the last thing anyone needs--to be working and feeling this way.
[takes deep breath -- rant against Nurse Sunshine over]
OK, sorry for the ranting/whining. I guess it's to be expected--I mean, lets face it, I'm no saintly patient person--I am a loud and opinionated woman. And I guess it's good to know that even when I'm feeling like crap (and OH YES, I FEEL LIKE CRAP) I can still be me (is that a silver lining kind of moment or is that just me recognizing that chemo or no chemo, cancer or no cancer, I'm going to keep being the person I am?).
*I am still nauseous/queasy and also a bit dizzy
Let me explain further. The nurse navigator that we met with the week before chemo, lets call her Nurse Sally Sunshine, made it seem as if I would have ZERO nausea--that the anti-nausea medication that they have now is so good and there have been so many advances that I should just not have a problem with nausea at all.
Well, maybe I'm an outlier (OK, I KNOW I'm an outlier) but I am having nausea. Not enough that I'm dry heaving in a crumpled heap with Julia Roberts holding my head while I wretch into a metal bin (if you've seen the film Dying Young then you know what I'm talking about), but enough that I don't feel good--I don't have much of an appetite and my stomach is constantly queasy.
I have a call out to another nurse (this one I like very much--Delma) and I have an appointment with Triangle Acupuncture next week--I have high hopes for the acupuncture--several people have recommended it as a way to help with the side effects of chemo (it helped one of my uncles). I just with Blue Cross/Blue Shield would get with the program and help cover alternative therapies (they don't, so it's all out of pocket).
*I'm not eating.
OK, this isn't technically true--I am eating--or rather constantly nibbling in an effort to hold the nausea at bay. But I'm not really eating big meals, and I'm doing just small nibbles. And it's sad--because I LOVE TO EAT. Or rather, I love food. I still do--and this is one of the saddest consequences of the chemo--having my taste buds change and not having an appetite. I've lost 5 lbs in 5 days, which I know isn't great--this is why I'm hoping the nurse will call back and/or acupuncture will work. If anyone reading this has recommendations on things to eat and how to deal with the change in taste buds and nausea, I'm all ears/eyes.
*I'm tired.
So if you know me, you know I'm a high energy kind of person. But I have to say that since chemo started, I've been much more tired--first it was at 25% below capacity, but I'd say that today (and yesterday) it's more like 50%. The mornings are better than the afternoons--and I'm usually asleep by 9pm or 10pm. I have been able to do a mile of walking in the mornings--and that seems to help with the nausea, interestingly enough. But I'd say by about 2pm I am in need of a nap, and more to the point, the energy it takes to do just a single thing feels sapping. And I'm someone used to multi-tasking, so this is a new reality for me.
There are a few more symptoms I'm having -- like some muscle/joint aches, some intermittent stomach cramping, a bit of a headache -- that aren't helpful but aren't completely constant or that feel debilitating like these other symptoms do. When Nurse Sunshine descried the side effects, she really low-balled it--she talked about how women on chemo still work and they are still Mom's who take their kids to the park and to the movie theaters and that the life I had before chemo and things I did before chemo will be things I can do while I'm on chemo.
Well you know what? She lied!
Because I cannot possibly think about walking 18 holes of golf while carrying my clubs in this heat while on chemo. And I have no desire to go to any restaurants or eat or, or to even cook, because I can't trust my cooking with my taste buds changed. And while I do recognize that there are people who are forced due to economic circumstances to work 9-5 jobs while on chemo, it should not be something that is encouraged because I AM REALLY EXHAUSTED AND FEEL SLIGHTLY NAUSEOUS 24/7. And this is the last thing anyone needs--to be working and feeling this way.
[takes deep breath -- rant against Nurse Sunshine over]
OK, sorry for the ranting/whining. I guess it's to be expected--I mean, lets face it, I'm no saintly patient person--I am a loud and opinionated woman. And I guess it's good to know that even when I'm feeling like crap (and OH YES, I FEEL LIKE CRAP) I can still be me (is that a silver lining kind of moment or is that just me recognizing that chemo or no chemo, cancer or no cancer, I'm going to keep being the person I am?).
Saturday, June 12, 2010
Saturday update & plug for a fantastic photographer
So this is day 3 of chemo and this morning was the worst day in terms of symptoms--I literally woke up nauseous--as in, if I didn't do something about it ASAP, I'd be hugging the porceleain goddess--probably dry heaving since I ate very little yesterday: small bowl of multigrain cereal with some blueberries and milk, half a luna bar (the nut-cranberry type), 3 peanut M&M's that tasted stale, a tiny bowl of homemade mulberry ice cream that now tastes like cardboard (3 days ago it was yummy), half a bowl of bean soup, 2 small pieces of bread, 4 olives, and a small portion of cucumber salad tossed with salt, pepper, olive oil and lemon. I have to tell you, this is pathetic in terms of what I'm normally able to pack away (and those of you who have been with me in my grazing sessions KNOW THIS).
Anyway, I've taken all the anti-nausea pills at my disposal, am wearing sea bands on my wrist to help with nausea, and my Mom made me a yummy cup of ginger tea (which steeped in boiling water for 10 minutes) and flavored with honey (which I will apparently no longer be able to tolerate when my white blood cell counts go down since honey has a natural occurring amount of botulism that healthy people can deal with and not-so-healthy people can't).
Other symptoms: my bones hurt. Literally. It's because I got a shot of this drug, neulasta--administered to me 24 hours after my chemo. The shot costs a whopping $3000! But if you get it administered through the Lineberger Center, it's free. So off I went at 2pm yesterday (Matthew waited in the car downstairs parked around the corner since it was supposed to be an in-and-out operation but truthfully I didn't walk out of there until 3pm--thank you hospital administration!
Anyway, 50% of people who get this shot experience severe pressure and pain in their long limbs (legs and arms) because the neulasta stimulates white cell production in the bone marrow--and so literally I could feel something happening yesterday night--I could FEEL my bone marrow--it was trippy! While the pain wasn't severe (I took 2 alleve when I started to feel the first twinge--tip from the nurse who gave me the shot), it was definitely uncomfortable--and still is a bit. Oh Joy. Now we can add bone pain/pressure to the list of symptoms we know I'll have the day after chemo.
But lets turn to more pleasant pastures, shall we? Specifically, 2 weeks ago we became Mr. and Dr. Jennifer Ho! I joke with Matthew about this because I am clearly NOT taking his name--even if I did it personally, I wouldn't nor shouldn't change anything professionally -- can you imagine the confusion? All of a sudden Dr. Jennifer Grady is publishing on Asian American culture and literature on racial ambiguity??? Too confusing. And besides which, I just don't feel like a Jennifer Grady--no offense to the lovely Grady clan. I am and shall ever be Jennifer Ho--and the tradition, in the conservative traditional sense, has always been that you do the highest title of the married couple--which in our case happens to be my faux-Dr. status (I say faux only because I mislead so many people the very few times I use the prefix "Dr" on a form--after all, what can I possibly repair except for a comma splice? Even though I did work hard for that PhD damn it!)
Anyway, we're married and it has been great and they always say that one of the ways to capture the fun and festivities of the weekend is through photos--a way to relive memories. And Matthew and I will be able to relive many MANY fond memories thanks to the fabulous, fantastic photographer we found through our friend Lynn York.
So let me introduce you to JEN YUSON.
Jen is in the far left taking photos--can't see her very well, but she's got this old school camera, a rolleiflex that she uses to shoot with REAL FILM!
I can't say enough great things about Jen and her husband, Shawn Baugess, who was also snapping photos (some great candids) and who also does graphic design at UNC Greensboro. Jen and Shawn were great because they blended in and fit in so well with both the low key vibe at the ceremony @the NC Art Museum Park and the more festive upbeat vibe of the Saturday party at Johnny's. Especially at Johnny's, half the time I had no idea where they were or what they were doing, yet the photos they produced showed how hard at work they were--because they put up 640 photos between the 2 days of wedding festivities (and if you really have a ton of time on your hands and REALLY want to see all 640 wedding photos, email me off-line and I'll send you the link and password that you'll need to access that archive).
Anyway, besides being a fantastic wedding photographer, Jen is an artist. I mean seriously, you should check out her website (click here).
And this article written about her in the Greensboro newspaper (click here).
I'm not getting a thing from Jen in return for plugging her. I just like her a lot, as a photographer/artist and as someone I can see myself hanging out with and eating noodles and lumpia with (when my appetite returns). And she said the nicest things about me and Matthew on her blog, and that's the last word I'm going to leave you with about Jen Yuson, except to say that if you are considering a professional head shot for your book or professional web site, if you think you may be getting married in the NC area, or want to document a big life event, Jen is your woman--she's reasonable, she's flexible, and she takes amazingly beautiful photos that capture a moment in time. Plus she described me on her blog as a the kind of person who kicks butt and takes names! But see for yourself (click here for the blog entry about Matthew & Jennifer).
Anyway, I've taken all the anti-nausea pills at my disposal, am wearing sea bands on my wrist to help with nausea, and my Mom made me a yummy cup of ginger tea (which steeped in boiling water for 10 minutes) and flavored with honey (which I will apparently no longer be able to tolerate when my white blood cell counts go down since honey has a natural occurring amount of botulism that healthy people can deal with and not-so-healthy people can't).
Other symptoms: my bones hurt. Literally. It's because I got a shot of this drug, neulasta--administered to me 24 hours after my chemo. The shot costs a whopping $3000! But if you get it administered through the Lineberger Center, it's free. So off I went at 2pm yesterday (Matthew waited in the car downstairs parked around the corner since it was supposed to be an in-and-out operation but truthfully I didn't walk out of there until 3pm--thank you hospital administration!
Anyway, 50% of people who get this shot experience severe pressure and pain in their long limbs (legs and arms) because the neulasta stimulates white cell production in the bone marrow--and so literally I could feel something happening yesterday night--I could FEEL my bone marrow--it was trippy! While the pain wasn't severe (I took 2 alleve when I started to feel the first twinge--tip from the nurse who gave me the shot), it was definitely uncomfortable--and still is a bit. Oh Joy. Now we can add bone pain/pressure to the list of symptoms we know I'll have the day after chemo.
But lets turn to more pleasant pastures, shall we? Specifically, 2 weeks ago we became Mr. and Dr. Jennifer Ho! I joke with Matthew about this because I am clearly NOT taking his name--even if I did it personally, I wouldn't nor shouldn't change anything professionally -- can you imagine the confusion? All of a sudden Dr. Jennifer Grady is publishing on Asian American culture and literature on racial ambiguity??? Too confusing. And besides which, I just don't feel like a Jennifer Grady--no offense to the lovely Grady clan. I am and shall ever be Jennifer Ho--and the tradition, in the conservative traditional sense, has always been that you do the highest title of the married couple--which in our case happens to be my faux-Dr. status (I say faux only because I mislead so many people the very few times I use the prefix "Dr" on a form--after all, what can I possibly repair except for a comma splice? Even though I did work hard for that PhD damn it!)
Anyway, we're married and it has been great and they always say that one of the ways to capture the fun and festivities of the weekend is through photos--a way to relive memories. And Matthew and I will be able to relive many MANY fond memories thanks to the fabulous, fantastic photographer we found through our friend Lynn York.
So let me introduce you to JEN YUSON.
Jen is in the far left taking photos--can't see her very well, but she's got this old school camera, a rolleiflex that she uses to shoot with REAL FILM!
I can't say enough great things about Jen and her husband, Shawn Baugess, who was also snapping photos (some great candids) and who also does graphic design at UNC Greensboro. Jen and Shawn were great because they blended in and fit in so well with both the low key vibe at the ceremony @the NC Art Museum Park and the more festive upbeat vibe of the Saturday party at Johnny's. Especially at Johnny's, half the time I had no idea where they were or what they were doing, yet the photos they produced showed how hard at work they were--because they put up 640 photos between the 2 days of wedding festivities (and if you really have a ton of time on your hands and REALLY want to see all 640 wedding photos, email me off-line and I'll send you the link and password that you'll need to access that archive).
Anyway, besides being a fantastic wedding photographer, Jen is an artist. I mean seriously, you should check out her website (click here).
And this article written about her in the Greensboro newspaper (click here).
I'm not getting a thing from Jen in return for plugging her. I just like her a lot, as a photographer/artist and as someone I can see myself hanging out with and eating noodles and lumpia with (when my appetite returns). And she said the nicest things about me and Matthew on her blog, and that's the last word I'm going to leave you with about Jen Yuson, except to say that if you are considering a professional head shot for your book or professional web site, if you think you may be getting married in the NC area, or want to document a big life event, Jen is your woman--she's reasonable, she's flexible, and she takes amazingly beautiful photos that capture a moment in time. Plus she described me on her blog as a the kind of person who kicks butt and takes names! But see for yourself (click here for the blog entry about Matthew & Jennifer).
Friday, June 11, 2010
Mourning the loss of my taste buds
Here are a few things I am most lately grateful for in the last 2-3 weeks:
*That I could savor all the dishes on our Chinese wedding banquet two weeks ago
*That I could devour my mother's Jamaican stew peas -- my favorite childhood dish -- last week
*That I got my first taste of "local yogurt" (I think that's the name of the company) in Durham where they have this delicious strawberry-original swirl
*That I got to enjoy both Hawaiian Kona coffee and Jamaican blue mountain coffee the week before and during all the wedding madness
*That I got to go to dim sum in Chapel Hill and discover that it's pretty decent and more importantly they have my favorite Cantonese style noodle dish.
*That I could taste every one of the three wedding sheet cakes we ordered for the party
I am grateful for these taste memories, and more, because I have turned into a textbook case of someone going through chemotherapy. When I was receiving the "C" portion of the "AC" cocktail yesterday (click here if you want the fully skinny on my first treatment) a mettalic taste was starting to creep into my mouth. It stayed with me through the afternoon and evening (although this morning it doesn't seem to have popped up). I was also having low level nausea--the kind you get when you've ridden a roller coaster (not one of the wild ones, just the regular up and down kind) and your head is a little dizzy but more than your head, your stomach just feels off? Actually, I'm not feeling dizzy so much as a bit light headed -- that seems to be due specifically to one of the anti-nausea drugs I'm on (1 of 4!).
And then when we were eating dinner last night, I noticed a few new things:
*Raw vegetables taste like dirt. I suppose you could say that we didn't clean the lettuce or carrots or bell peppers enough, but I don't think that was the problem. It seems as if raw vegetables are not appealing to me right now. Which I think is horrific because I love eating baby carrots and a nice salad once a week.
*Citrus taste exacerbates the mettalic taste. So does vinegar.
*Hamburgers are hard for me to chew and swallow--I literally had to take baby bites of the bison-beef burgers Matthew and his brother grilled up, and I had to chew them into tiny portions before I was able to swallow. I had no problems swallowing other foods, like the baked beans or the hot dog or the salad.
*My taste buds are off because when I was doctoring the baked beans (I always put in a dollop of ketchup, mustard, and brown sugar--a tip I learned from Beth) I couldn't taste that I went too heavy with the mustard. It wasn't awful, according to my Mom, but it was noticeable.
All of which is to say, my taste buds are clearly off. But what is more distressing is that I'm not all that interested in eating.
[SHOCK! HORROR! GASPS of SURPRISE!]
I KNOW! I KNOW! I KNOW!
It is a terrible irony (and I think this counts as irony) that a week after receiving so many lovely wedding gifts and shower gifts that are themed around cooking and food and EATING, that the idea of cooking and handling food and eating is really unappealing to me.
I don't have any desire to pick up The Barefood Contessa cookbook or Mark Bittman's "How to Cook Everything" or the Italian cookbook bible by Marcella Hazen. It all seems grey.
I'm hoping that this is just a phase--perhaps this will subside and I will go through eating jags (which is what one of the nurses suggested) where all I'll want is tacos or pizza or chicken marasala or udon noodles. I hope so. I am still eating, more because I know I should than because I desire or crave a particular taste in my mouth.
Which is really sad for me--because I LOVE the feeling of desiring or craving a particular taste in my mouth.
But the practical gal in me knows that this is all temporary. And certainly Matthew has all his taste buds (and appetite) in tact. Which brings me to the Bruno & Food drop-off schedule. We have both been really bowled away by everyone's generosity and willingness to pitch in. And I've been receiving email and phone calls lightly encouraging me to add more dates--as it stood, we were only listing the days of the chemo and when Matthew works, but the truth is, I may be at my lowest 7-10 days after treatment because that's when my white blood cell counts are lowest. So we added in Sundays and Wednesdays off-week from the original schedule. Again, PLEASE DO NOT FEEL OBLIGED TO SIGN UP. But for those of you who said that you would like to sign up for a summer date, esp. since the fall gets busy, we thought this might be helpful.
Here's the link to the Sign-in sheet
And once again, thank you all SO MUCH. I'll be sending email messages to the dog walkers and the food droppers to thank you more personally and explain a few thing about Bruno, the lovable but tempermental dog--who also now has a new summer hair cut! (I don't have a photo so you'll just have to see for yourself!)
*That I could savor all the dishes on our Chinese wedding banquet two weeks ago
*That I could devour my mother's Jamaican stew peas -- my favorite childhood dish -- last week
*That I got my first taste of "local yogurt" (I think that's the name of the company) in Durham where they have this delicious strawberry-original swirl
*That I got to enjoy both Hawaiian Kona coffee and Jamaican blue mountain coffee the week before and during all the wedding madness
*That I got to go to dim sum in Chapel Hill and discover that it's pretty decent and more importantly they have my favorite Cantonese style noodle dish.
*That I could taste every one of the three wedding sheet cakes we ordered for the party
I am grateful for these taste memories, and more, because I have turned into a textbook case of someone going through chemotherapy. When I was receiving the "C" portion of the "AC" cocktail yesterday (click here if you want the fully skinny on my first treatment) a mettalic taste was starting to creep into my mouth. It stayed with me through the afternoon and evening (although this morning it doesn't seem to have popped up). I was also having low level nausea--the kind you get when you've ridden a roller coaster (not one of the wild ones, just the regular up and down kind) and your head is a little dizzy but more than your head, your stomach just feels off? Actually, I'm not feeling dizzy so much as a bit light headed -- that seems to be due specifically to one of the anti-nausea drugs I'm on (1 of 4!).
And then when we were eating dinner last night, I noticed a few new things:
*Raw vegetables taste like dirt. I suppose you could say that we didn't clean the lettuce or carrots or bell peppers enough, but I don't think that was the problem. It seems as if raw vegetables are not appealing to me right now. Which I think is horrific because I love eating baby carrots and a nice salad once a week.
*Citrus taste exacerbates the mettalic taste. So does vinegar.
*Hamburgers are hard for me to chew and swallow--I literally had to take baby bites of the bison-beef burgers Matthew and his brother grilled up, and I had to chew them into tiny portions before I was able to swallow. I had no problems swallowing other foods, like the baked beans or the hot dog or the salad.
*My taste buds are off because when I was doctoring the baked beans (I always put in a dollop of ketchup, mustard, and brown sugar--a tip I learned from Beth) I couldn't taste that I went too heavy with the mustard. It wasn't awful, according to my Mom, but it was noticeable.
All of which is to say, my taste buds are clearly off. But what is more distressing is that I'm not all that interested in eating.
[SHOCK! HORROR! GASPS of SURPRISE!]
I KNOW! I KNOW! I KNOW!
It is a terrible irony (and I think this counts as irony) that a week after receiving so many lovely wedding gifts and shower gifts that are themed around cooking and food and EATING, that the idea of cooking and handling food and eating is really unappealing to me.
I don't have any desire to pick up The Barefood Contessa cookbook or Mark Bittman's "How to Cook Everything" or the Italian cookbook bible by Marcella Hazen. It all seems grey.
I'm hoping that this is just a phase--perhaps this will subside and I will go through eating jags (which is what one of the nurses suggested) where all I'll want is tacos or pizza or chicken marasala or udon noodles. I hope so. I am still eating, more because I know I should than because I desire or crave a particular taste in my mouth.
Which is really sad for me--because I LOVE the feeling of desiring or craving a particular taste in my mouth.
But the practical gal in me knows that this is all temporary. And certainly Matthew has all his taste buds (and appetite) in tact. Which brings me to the Bruno & Food drop-off schedule. We have both been really bowled away by everyone's generosity and willingness to pitch in. And I've been receiving email and phone calls lightly encouraging me to add more dates--as it stood, we were only listing the days of the chemo and when Matthew works, but the truth is, I may be at my lowest 7-10 days after treatment because that's when my white blood cell counts are lowest. So we added in Sundays and Wednesdays off-week from the original schedule. Again, PLEASE DO NOT FEEL OBLIGED TO SIGN UP. But for those of you who said that you would like to sign up for a summer date, esp. since the fall gets busy, we thought this might be helpful.
Here's the link to the Sign-in sheet
And once again, thank you all SO MUCH. I'll be sending email messages to the dog walkers and the food droppers to thank you more personally and explain a few thing about Bruno, the lovable but tempermental dog--who also now has a new summer hair cut! (I don't have a photo so you'll just have to see for yourself!)
Thursday, June 10, 2010
The view from chemo chair #16
[NOTE: if you are only reading this for medical info on Jennifer, the most relevant info to know is that I started chemo today and it's all going well so far--I'm on a cocktail of anti-nausea meds, in addition to the "AC" chemo cocktail. My stomach is feeling a bit sensitive, but other than that, I'm fine--read below if you want to know more about my port surgery and/or my ruminations from Chemo Chair #16]
Hello folks--I'm writing to you live and in-person from Chemo Chair #16 at the UNC Lineberger Comprehensive Cancer Center. My nurse/bartender for today is Julie (just like the Love Boat!) and she's hooked me up to an anti-nausea cocktail of several things to help with the REAL drugs I'll be getting--the "AC" cocktail. I must admit that even though this is just the warm-up act, I'm feeling kinda weird/loopy with these anti-nausea drugs. Since this is my first time they are running my meds on a s-l-o-w d-r-i-p into my port. It looks like I have another half an hour on the anti-nausea meds, and then they have to order the chemo meds and that's another hour and a half, so I probably won't get out of here any earlier than 2 or 2:30pm.
A word about my port. I had it surgically put in on Monday--my appointment was scheduled for 3pm but I wasn't actually wheeled into an OR until closer to 5pm. Now, no one had told me what the surgery would entail and everyone made it seem like it was no big deal--a simple out-patient procedure. And in many ways they were right--the actual operation itself, start to finish, was only an hour, and then it was only half an hour for me to be in the recovery room because I was never "out" per se--I was in what they call "twilight"--meaning, I was never completed knocked out. In fact, according to my nurse, Tom, who was the one who pushed all the drugs through my i.v., I apparently told him that when I get anxious I make lists (which is true) and then I proceeded to list all the dog breeds I could think of in alphabetical order starting with chihuahua, then chow chow, then daushaund, and you get the picture.
I, of course, don't recall ANY OF THIS...although I had been making lists in my head to calm myself before the surgery--specifically I was listing all the Jane Austen novels in order of publication date and then all the major characters in all the Jane Austen novels. Yes, I am a lit nerd. Yes I am an Austen fan.
So if you are wondering, just what IS a surgical port??? Well, here's what it looks like:
The diameter is about the size of a quarter and the depth is a little thicker than a bottle cap. It is hollow and has 6 inches of tubing that runs from its center--the tubing goes through my jugular vein on my right side and directly into my heart. As Matthew kept saying to me Monday night,
"THERE'S A TUBE RUNNING RIGHT INTO YOUR HEART!"
This image doesn't show the tube running right into the heart but it does show, pretty accurately, where the port is initially placed, right under the collar bone, and then they run the tube up through the jugular and then it continue down into your heart chamber.
So that's my port. The silly people at Interventional Radiology did NOT send me home with any pain medication--they said that extra strength tylenol would be fine (I'm allergic to ibuprofren--so no motrin for me). Let me tell you I WAS IN A LOT OF PAIN AT 10PM AND EXTRA STRENGTH TYLENOL WOULD NOT HAVE CUT IT! Luckily I still had percocette tabs left over from my lumpectomy/biopsy surgery so I took 2 tabs at 10pm and then went to bed and woke up at 2am and took 2 more pills (you can take 1-2 every 4 hours and trust me, I did!). So a note to the folks in Interventional Radiology: send your patients home with a prescription for 6 percocette tabs! They will not become addicted--they will more than likely need them because they have a tube running from the jugular vein into their heart and they had to actually make 2 incisions--one below the collarbone and one at the neck to access the jugular vein. You can read more about chemo ports by clicking here.
OK, back to the chemo chair. I first sat down around 10:45am and it's now 1:33pm. I'll probably be here for another 20 minutes. I think it's extra slow this first time, because they want to monitor my reactions. Since I've been here, two women in chairs next to me have left, and 2 other women have started their own treatment. The two new women seem to know one another since they greeted one another--as did the people (both women) who were with them--one a friend, the other a partner. I have finished the round of anti-nausea meds, and I finished the "A" part of the "AC" cocktail--that only took about 15 minutes (and that sucker is the one that will be responsible for my hair loss--DAMN YOU!). Now I'm on the "C" part--which is the culprit responsible for the nausea that I'm bound to get (apparently if you are prone to motion sickness, you will more than likely get nauseous with the chemo, but they give you lots of drugs for that). I'm definitely feeling a bit rough in the belly--and a bit light headed--and my lips are cold and I'm getting a mettalic taste in my mouth.
(sigh)
Welcome to chemoland!
When I woke up this morning, I was sort've nervous. Now that I'm here? I'm pissed. Seriously, my predominant emotion at this moment is anger. Not big anger, just low level piss-offed-ness. Major frustration and annoyance. I mean WHO HAS TIME TO SIT IN A CHEMO CHAIR??!!! REALLY? I HAVE TO BE ON 3 DIFFERENT MEDICATIONS TO DEAL WITH THE NAUSEA THAT COMES FROM CHEMO TREATMENT???!!! And of course MY HAIR IS ABOUT TO FALL OUT IN 2 WEEKS!
On that note, let me show you some pictures we took at the wig store and at home of me with the two wigs--the first I call my "casual/sporty" wig (note the comfy black headband--and yes, this wig essentially looks exactly like my normal hair--it looks like I'm just wearing a headband):
At In the Pink
At home
And THIS is my "going out" wig--and yes, I AM going to be teaching with this wig in the spring since my hair won't grow back in until the summer:
Outside the store
At home
[The name of this wig is "Strawberry Syrup!" According to Jeremy, I look like a lot of women he's seen in Tokyo--go me for being fashion forward without having to bleach the hell out of my hair!]
Anyway, for whatever reason, my default emotion with all of this is anger. I am an Angry Asian girl (click here if you don't get the cartoon reference). I'm angry that this is disrupting my life, Matthew's life, the lives of my family and friends. I'm angry that I'm not going to be teaching in the fall and that I have to be hooked up to an i.v. to get chemo every other week for 16 weeks. I'm angry that my nurse navigator, Leslie, didn't give me correct information when I saw her last week about a shot that I need to have on Friday (it's a shot that will help increase my white blood cells). I'm angry that 7-10 days after each chemo treatment my white blood cell count will be low and I'll have to be careful about being around crowds and esp. around anyone who might be sick (like kids). And I'm angry that I won't be able to hug Layla on her 3rd birthday because I love Layla and want to give her a big hug and kiss. And I'm angry that I'm going to have surgery at the end of all of this and my breasts will be removed and the recovery and rehabilitation will be difficult and painful. And I'm angry at all the people who tell me to have a positive attitude or who tell me not to be angry because I think righteous anger can be productive and I have enough righteous anger to fuel a mack truck. And I'm angry at all those fucking pink ribbons and the fact that AstraZeneca, the drug company that makes tomoxifen (the drug I'll be on for 5 years that will make me go into early menopause, which also makes me angry) is the one who created "Breast Cancer Awareness Month" and they are also the same company whose parent corporation, Imperial Chemical, makes a fertilizer that is known to cause...breast cancer. And I'm just angry that I now have this worry in the back of my head that I might die--that I'm sure I won't die--and of course everyone will die one day--but I mean that the cancer will return and I might die an earlier death than I normally would because of this damn cancer.
[takes deep breath]
Truthfully, I'm probably not nearly as angry as the above rant makes me seem. I'm just tired and frustrated and annoyed. And a little pissed off. But overall I'm doing OK--I mean, there's no way to deal with this but to just deal with it. So I'm dealing with it. And on that note, let me leave you with a picture of Matthew that should be good for a laugh for all of us!
P.S. Thank you SO MUCH to everyone who signed up for Bruno walking or food drop offs for the next 16 weeks! We are bowled over by your generosity! I also wanted to say to folks who aren't able to sign up, that we would never turn away food or offers to walk Bruno--and if you notice, these aren't weekly dates, we've only listed 3 days every other week when we think we'll need help. What I'm saying is, if you wanted to come on a day that wasn't listed to drop off a dish, we'd be extremely grateful and appreciative, although no one should feel obliged to do this AT ALL. I was amazed that so many of you signed up for so many slots! Actually, I'm not amazed because we know how amazing our friends are! Anyway, I'll include the link to the google sign-up sheet here if anyone wants to see about a slot in late August/September. And if you want to just drop off a dish on a date not listed, feel free to just email me!
P.P.S. [UPDATE: 4:09pm EST] I'm at home now, lying down in my bedroom and sipping some gingerale. I seem to be exhibiting text book symptoms: I'm tired, a bit light headed, slightly naueous, and I have a slight metallic taste in my mouth. Anyway, I'm going to be resting up here for the next few days--apparently this first round of chemo should help me to predict how I'll be on subsequent rounds of chemo--at least through the AC regimen--with taxol you never know. I also thought I'd leave you with two photos of me in Chemo Chair #16 that my Mom took -- she and my Dad traded off in the visitor chair (they only let you have one visitor at a time) until Matthew came and then he took over the final half hour stretch.
Me with my laptop--I mean, what would I do if I couldn't have my laptop with me???
This photo gives you a better sense of how I'm getting the chemo treatment--you can see the i.v. line snaking into my shirt--that's where the port is--the bags with saline and the chemo drugs are above the machine.
Finally, BIG PROPS to the nurses I had today--Delma and Shelly in the oncology clinic and Julie in the Chemo infusion clinic. All three were enormously helpful and straightshooters who didn't sugar coat things for me and talked to me like the capable adult that I am. Shelly even came and found me in the chemo chair because I had forgotten to take some extra wipes to deal with cleaning my port--and Julie was THE BEST nurse for me to have during this first round. She took me on a little tour of the clinic, showed me where the bathrooms were, where the kitchen is (I can eat all the crackers and drink as much gingerale and eat as much chicken soup or tomato soup as I want) and just explained what she's found to be true for patients in her experience working in the chemo room. She's a direct no-nonsense nurse who is originally from upstate NY and she and I bonded over the fact that both of us get in trouble all the time in the South because we say things that are too direct and we can't figure out the cultural/gender codes. I *heart* Julie!
Hello folks--I'm writing to you live and in-person from Chemo Chair #16 at the UNC Lineberger Comprehensive Cancer Center. My nurse/bartender for today is Julie (just like the Love Boat!) and she's hooked me up to an anti-nausea cocktail of several things to help with the REAL drugs I'll be getting--the "AC" cocktail. I must admit that even though this is just the warm-up act, I'm feeling kinda weird/loopy with these anti-nausea drugs. Since this is my first time they are running my meds on a s-l-o-w d-r-i-p into my port. It looks like I have another half an hour on the anti-nausea meds, and then they have to order the chemo meds and that's another hour and a half, so I probably won't get out of here any earlier than 2 or 2:30pm.
A word about my port. I had it surgically put in on Monday--my appointment was scheduled for 3pm but I wasn't actually wheeled into an OR until closer to 5pm. Now, no one had told me what the surgery would entail and everyone made it seem like it was no big deal--a simple out-patient procedure. And in many ways they were right--the actual operation itself, start to finish, was only an hour, and then it was only half an hour for me to be in the recovery room because I was never "out" per se--I was in what they call "twilight"--meaning, I was never completed knocked out. In fact, according to my nurse, Tom, who was the one who pushed all the drugs through my i.v., I apparently told him that when I get anxious I make lists (which is true) and then I proceeded to list all the dog breeds I could think of in alphabetical order starting with chihuahua, then chow chow, then daushaund, and you get the picture.
I, of course, don't recall ANY OF THIS...although I had been making lists in my head to calm myself before the surgery--specifically I was listing all the Jane Austen novels in order of publication date and then all the major characters in all the Jane Austen novels. Yes, I am a lit nerd. Yes I am an Austen fan.
So if you are wondering, just what IS a surgical port??? Well, here's what it looks like:
The diameter is about the size of a quarter and the depth is a little thicker than a bottle cap. It is hollow and has 6 inches of tubing that runs from its center--the tubing goes through my jugular vein on my right side and directly into my heart. As Matthew kept saying to me Monday night,
"THERE'S A TUBE RUNNING RIGHT INTO YOUR HEART!"
This image doesn't show the tube running right into the heart but it does show, pretty accurately, where the port is initially placed, right under the collar bone, and then they run the tube up through the jugular and then it continue down into your heart chamber.
So that's my port. The silly people at Interventional Radiology did NOT send me home with any pain medication--they said that extra strength tylenol would be fine (I'm allergic to ibuprofren--so no motrin for me). Let me tell you I WAS IN A LOT OF PAIN AT 10PM AND EXTRA STRENGTH TYLENOL WOULD NOT HAVE CUT IT! Luckily I still had percocette tabs left over from my lumpectomy/biopsy surgery so I took 2 tabs at 10pm and then went to bed and woke up at 2am and took 2 more pills (you can take 1-2 every 4 hours and trust me, I did!). So a note to the folks in Interventional Radiology: send your patients home with a prescription for 6 percocette tabs! They will not become addicted--they will more than likely need them because they have a tube running from the jugular vein into their heart and they had to actually make 2 incisions--one below the collarbone and one at the neck to access the jugular vein. You can read more about chemo ports by clicking here.
OK, back to the chemo chair. I first sat down around 10:45am and it's now 1:33pm. I'll probably be here for another 20 minutes. I think it's extra slow this first time, because they want to monitor my reactions. Since I've been here, two women in chairs next to me have left, and 2 other women have started their own treatment. The two new women seem to know one another since they greeted one another--as did the people (both women) who were with them--one a friend, the other a partner. I have finished the round of anti-nausea meds, and I finished the "A" part of the "AC" cocktail--that only took about 15 minutes (and that sucker is the one that will be responsible for my hair loss--DAMN YOU!). Now I'm on the "C" part--which is the culprit responsible for the nausea that I'm bound to get (apparently if you are prone to motion sickness, you will more than likely get nauseous with the chemo, but they give you lots of drugs for that). I'm definitely feeling a bit rough in the belly--and a bit light headed--and my lips are cold and I'm getting a mettalic taste in my mouth.
(sigh)
Welcome to chemoland!
When I woke up this morning, I was sort've nervous. Now that I'm here? I'm pissed. Seriously, my predominant emotion at this moment is anger. Not big anger, just low level piss-offed-ness. Major frustration and annoyance. I mean WHO HAS TIME TO SIT IN A CHEMO CHAIR??!!! REALLY? I HAVE TO BE ON 3 DIFFERENT MEDICATIONS TO DEAL WITH THE NAUSEA THAT COMES FROM CHEMO TREATMENT???!!! And of course MY HAIR IS ABOUT TO FALL OUT IN 2 WEEKS!
On that note, let me show you some pictures we took at the wig store and at home of me with the two wigs--the first I call my "casual/sporty" wig (note the comfy black headband--and yes, this wig essentially looks exactly like my normal hair--it looks like I'm just wearing a headband):
At In the Pink
At home
And THIS is my "going out" wig--and yes, I AM going to be teaching with this wig in the spring since my hair won't grow back in until the summer:
Outside the store
At home
[The name of this wig is "Strawberry Syrup!" According to Jeremy, I look like a lot of women he's seen in Tokyo--go me for being fashion forward without having to bleach the hell out of my hair!]
Anyway, for whatever reason, my default emotion with all of this is anger. I am an Angry Asian girl (click here if you don't get the cartoon reference). I'm angry that this is disrupting my life, Matthew's life, the lives of my family and friends. I'm angry that I'm not going to be teaching in the fall and that I have to be hooked up to an i.v. to get chemo every other week for 16 weeks. I'm angry that my nurse navigator, Leslie, didn't give me correct information when I saw her last week about a shot that I need to have on Friday (it's a shot that will help increase my white blood cells). I'm angry that 7-10 days after each chemo treatment my white blood cell count will be low and I'll have to be careful about being around crowds and esp. around anyone who might be sick (like kids). And I'm angry that I won't be able to hug Layla on her 3rd birthday because I love Layla and want to give her a big hug and kiss. And I'm angry that I'm going to have surgery at the end of all of this and my breasts will be removed and the recovery and rehabilitation will be difficult and painful. And I'm angry at all the people who tell me to have a positive attitude or who tell me not to be angry because I think righteous anger can be productive and I have enough righteous anger to fuel a mack truck. And I'm angry at all those fucking pink ribbons and the fact that AstraZeneca, the drug company that makes tomoxifen (the drug I'll be on for 5 years that will make me go into early menopause, which also makes me angry) is the one who created "Breast Cancer Awareness Month" and they are also the same company whose parent corporation, Imperial Chemical, makes a fertilizer that is known to cause...breast cancer. And I'm just angry that I now have this worry in the back of my head that I might die--that I'm sure I won't die--and of course everyone will die one day--but I mean that the cancer will return and I might die an earlier death than I normally would because of this damn cancer.
[takes deep breath]
Truthfully, I'm probably not nearly as angry as the above rant makes me seem. I'm just tired and frustrated and annoyed. And a little pissed off. But overall I'm doing OK--I mean, there's no way to deal with this but to just deal with it. So I'm dealing with it. And on that note, let me leave you with a picture of Matthew that should be good for a laugh for all of us!
P.S. Thank you SO MUCH to everyone who signed up for Bruno walking or food drop offs for the next 16 weeks! We are bowled over by your generosity! I also wanted to say to folks who aren't able to sign up, that we would never turn away food or offers to walk Bruno--and if you notice, these aren't weekly dates, we've only listed 3 days every other week when we think we'll need help. What I'm saying is, if you wanted to come on a day that wasn't listed to drop off a dish, we'd be extremely grateful and appreciative, although no one should feel obliged to do this AT ALL. I was amazed that so many of you signed up for so many slots! Actually, I'm not amazed because we know how amazing our friends are! Anyway, I'll include the link to the google sign-up sheet here if anyone wants to see about a slot in late August/September. And if you want to just drop off a dish on a date not listed, feel free to just email me!
P.P.S. [UPDATE: 4:09pm EST] I'm at home now, lying down in my bedroom and sipping some gingerale. I seem to be exhibiting text book symptoms: I'm tired, a bit light headed, slightly naueous, and I have a slight metallic taste in my mouth. Anyway, I'm going to be resting up here for the next few days--apparently this first round of chemo should help me to predict how I'll be on subsequent rounds of chemo--at least through the AC regimen--with taxol you never know. I also thought I'd leave you with two photos of me in Chemo Chair #16 that my Mom took -- she and my Dad traded off in the visitor chair (they only let you have one visitor at a time) until Matthew came and then he took over the final half hour stretch.
Me with my laptop--I mean, what would I do if I couldn't have my laptop with me???
This photo gives you a better sense of how I'm getting the chemo treatment--you can see the i.v. line snaking into my shirt--that's where the port is--the bags with saline and the chemo drugs are above the machine.
Finally, BIG PROPS to the nurses I had today--Delma and Shelly in the oncology clinic and Julie in the Chemo infusion clinic. All three were enormously helpful and straightshooters who didn't sugar coat things for me and talked to me like the capable adult that I am. Shelly even came and found me in the chemo chair because I had forgotten to take some extra wipes to deal with cleaning my port--and Julie was THE BEST nurse for me to have during this first round. She took me on a little tour of the clinic, showed me where the bathrooms were, where the kitchen is (I can eat all the crackers and drink as much gingerale and eat as much chicken soup or tomato soup as I want) and just explained what she's found to be true for patients in her experience working in the chemo room. She's a direct no-nonsense nurse who is originally from upstate NY and she and I bonded over the fact that both of us get in trouble all the time in the South because we say things that are too direct and we can't figure out the cultural/gender codes. I *heart* Julie!
Sunday, June 6, 2010
Going . . . going . . . (but not yet gone...) & sign-up sheet link
So I got the dates of my arterial port surgery mixed up. To be fair (because I'm usually not such a space cadet), when the nurse called to confirm my oncology appt, my surgery appt, and my chemo appt, I was walking Bruno with my friend JoAnna (who is briefly in town) and I repeated, aloud several times, the days rather than the dates of the appointments. So I blame the nurse because while she may have given me the correct date, initially, she mis-spoke on the day of the week. So I thought the surgery was happening Tuesday but no, the confirmation phone call and mail says Monday @3pm at the Interventional Radiology Unit of Memorial Hospital. It is outpatient surgery, but it's still surgery--meaning, I need a "RESPONSIBLE ADULT" (this is the language of the surgery prep sheet) to wait during the surgery (which should last all of an hour, hour and a half) and who can drive me home because I "CANNOT BE RELEASED TO A TAXI CAB OR BUS DRIVER." Sad to think of someone taking the bus to surgery.
So tomorrow the arterial port is put in--which will be inserted under the skin underneath my collarbone--it won't be visible but I'll be able to feel it. And then at 9am on Thursday, June 10, it's the first round of chemo.
Anyway, in preparation for the upcoming chemo treatments and loss of my hair, I went to DB Sutton on Franklin Street and had none other than the illustrious David Sutton do his magic on my hair. I told him that he could do ANYTHING he wanted to do to my hair, although I was hoping to mimic the hair of one of his stylists, Rachel (who was the woman responsible for my amazing wedding hairstyle!).
Anyway, here's what I look like before...
And now AFTER!
This is me amazed at how short my hair is (for the record, I have NEVER had my hair cut this short before!)
David did a FANTASTIC job--and my hair feels much lighter now, and thus it will be much less traumatic when it does start to fall out (which should be 2-3 weeks after the initial chemo treatment).
So right after we left DB Sutton we went to In the Pink, a wig store designed especially for women who are going through hair loss issues as a direct result of cancer or other life altering diseases. Dana, the owner of In the Pink, is herself a cancer survivor and her store is essentially the place she wished she had when she was going through chemo. She was wonderful about helping me find wigs and advice about how to put them on, the upkeep, and being able to order different styles and colors on my preferences.
Here's Dana helping me prepare for trying on wigs
And here's me with one of the two wigs I ended up buying (I was trying to bounce around to make sure it wouldn't fall off!)
The battery on my camera died before I could get a photo of me with the second wig...lets just say it's not a style you'd typically find me in, and I decided to do something DIFFERENT.
Finally, thanks for folks who left comments on the previous post saying you'd like to get an email message about the sign-up sheet. Jordynn (who is a genius at many things) managed to create a google spreadsheet that allows anyone to view and sign up--so you don't need a gmail account to view this, all you need to do is click on the link below if you are interested in signing up to help walk Bruno or drop off a dish.
Sign Up Sheet Link
There's absolutely NO PRESSURE to do either, but we've been inundated with generous offers of both and David (of DB Sutton) told me (when he generously informed me that my haircut was gratis) that when people offer to help, it is very important to accept what people give--that as much as my natural pride and my own caretaker personality may balk at this, in the next 4-6 months I will need to rely on others. And he's right. I know I can't do this alone--and I know that Matthew and I are not alone, and for that, I'm extraordinarily grateful! So thank you in advance to everyone who is able to help out or who leaves a comment or calls or sends an email message or a card--all of it, every single gesture of kindness and caring, means so much to us.
So tomorrow the arterial port is put in--which will be inserted under the skin underneath my collarbone--it won't be visible but I'll be able to feel it. And then at 9am on Thursday, June 10, it's the first round of chemo.
Anyway, in preparation for the upcoming chemo treatments and loss of my hair, I went to DB Sutton on Franklin Street and had none other than the illustrious David Sutton do his magic on my hair. I told him that he could do ANYTHING he wanted to do to my hair, although I was hoping to mimic the hair of one of his stylists, Rachel (who was the woman responsible for my amazing wedding hairstyle!).
Anyway, here's what I look like before...
And now AFTER!
This is me amazed at how short my hair is (for the record, I have NEVER had my hair cut this short before!)
David did a FANTASTIC job--and my hair feels much lighter now, and thus it will be much less traumatic when it does start to fall out (which should be 2-3 weeks after the initial chemo treatment).
So right after we left DB Sutton we went to In the Pink, a wig store designed especially for women who are going through hair loss issues as a direct result of cancer or other life altering diseases. Dana, the owner of In the Pink, is herself a cancer survivor and her store is essentially the place she wished she had when she was going through chemo. She was wonderful about helping me find wigs and advice about how to put them on, the upkeep, and being able to order different styles and colors on my preferences.
Here's Dana helping me prepare for trying on wigs
And here's me with one of the two wigs I ended up buying (I was trying to bounce around to make sure it wouldn't fall off!)
The battery on my camera died before I could get a photo of me with the second wig...lets just say it's not a style you'd typically find me in, and I decided to do something DIFFERENT.
Finally, thanks for folks who left comments on the previous post saying you'd like to get an email message about the sign-up sheet. Jordynn (who is a genius at many things) managed to create a google spreadsheet that allows anyone to view and sign up--so you don't need a gmail account to view this, all you need to do is click on the link below if you are interested in signing up to help walk Bruno or drop off a dish.
Sign Up Sheet Link
There's absolutely NO PRESSURE to do either, but we've been inundated with generous offers of both and David (of DB Sutton) told me (when he generously informed me that my haircut was gratis) that when people offer to help, it is very important to accept what people give--that as much as my natural pride and my own caretaker personality may balk at this, in the next 4-6 months I will need to rely on others. And he's right. I know I can't do this alone--and I know that Matthew and I are not alone, and for that, I'm extraordinarily grateful! So thank you in advance to everyone who is able to help out or who leaves a comment or calls or sends an email message or a card--all of it, every single gesture of kindness and caring, means so much to us.
Thursday, June 3, 2010
Chemo schedule set & Wedding pics
So here's the newest cancer update. Had my oncology appointment w/Dr. Lisa Carey and I will be starting a 16 week chemotherapy regimen starting on Thursday, June 10. For 8 weeks, I'll be receiving 4 doses every 2 weeks (or every other week) of AC (I can't spell let alone pronounce these two drugs but I think they are adrenomyacin & cyclophoshphetene -- apparently they are common chemo drugs) and then I'll be on a round of Toxil for 8 weeks, receiving 4 doses every 2 weeks/every other week, which means I should be done with the entire round of chemo in late September. The schedule may be amended if I have to stop treatment due to low white blood cell count or if I catch the flu (hence, I'm avoiding all populations of folks who get sick--which is why I'm not teaching in the fall). So if all goes well I should be scheduled for surgery in the last week of October or first week of November (that's the bi-lateral/double mastectomy that Dr. Amos will be doing).
The first 8 weeks of the AC chemo drugs take about 3-4 hours (including a clinic appointment w/Dr. Carey & anti-nausea meds they give me) and the last 8 weeks on toxil is longer -- probably 5-6 hours (the infusion for toxil is 3 hours vs. 1.5 for the AC cocktail). Major side effects will include nausea (they'll manage this with meds), low blood count (both white and red), fatigue, and hair loss--but of course there are other symptoms (like mouth/throat sores, bleeding, blood clotting issues) that can also happen (rarer but possible, at least the blood stuff).
So that ends the medical portion of this post. I'll be having out-patient surgery next week Tuesday, June 8 @3pm to put in a port that will go below my collarbone--that's how I'll be receiving chemo. The worst thing about out-patient surgery is that you can't eat for 6 hours prior to surgery and you can't drink anything 2 hours prior to surgery--UGH. But you know, compared with what I'll be faced with in terms of chemo and future mastectomy surgery, not a big deal at all.
Anyway, my parents will be able to go to my first chemo appointment with me on June 10 (Thursday)--they'll head back to CA on Sunday, June 13. I know folks have been asking "What can I do?" Laura & Jordynn are going to be organizing some Google calendars for future chemo help (mostly walking Bruno, dropping off food, and potentially taking me to my treatment if Matthew can't make it--so far he's re-arranged his work schedule to be able to be my chauffer). So if you're interested in getting an email about the google doc, leave a comment and I'll be sure to include you on the mass mail that Jordynn and Laura will send out (you do need a gmail account to access the calendar, so if you don't have one, you may need to contact Laura/Jordynn directly for help).
Finally, besides the chemo treatment and the cancer, the other big life event happening in May was THE WEDDING!!! So I'm going to end on a happy note by including photos from both the small ceremony we had with just immediate family that was held at the NC Museum of Art Park (we got married in the Lowe's Pavilion & took photos there and at the rings) and then the following day we had a party at Johnny's in Carroboro.
Jen & Matthew in the Lowe's Pavillion
Lizzie (Matthew's sister) was the officiant (we ordained her on-line!)
We're Married!
After the ceremony
Leaving the Park through the rings
Deepfried eggplant stuffed with pork (1 of 14 courses that we had as part of our Chinese banquet at Super Wok in Cary, NC)
Peking Duck
Lobster
The Wedding Party on Saturday @Johnny's (this is the jazz combo who played--they also play on Saturday mornings @Johnny's)
Explaining the 3 different cakes that we had w/the different phrases we used as decoration: "It's your turn to do the dishes" (on the yellow-chocolate ganache-almond buttercream frosting cake), "Can you walk bruno?" (on the lemon-lemon curd-lemon buttercream cake), and "Have you seen my keys?" (on the vegan chocolate-chocolate-chocolate cake)--the flowers were used as decoration compliments of my cousins Jeanine & Eileen!
Our friend Shannon giving a toast before we cut the cakes
Moving the party across the street to our house
Hanging out with friends
Me cleaning up at the end of the night
The first 8 weeks of the AC chemo drugs take about 3-4 hours (including a clinic appointment w/Dr. Carey & anti-nausea meds they give me) and the last 8 weeks on toxil is longer -- probably 5-6 hours (the infusion for toxil is 3 hours vs. 1.5 for the AC cocktail). Major side effects will include nausea (they'll manage this with meds), low blood count (both white and red), fatigue, and hair loss--but of course there are other symptoms (like mouth/throat sores, bleeding, blood clotting issues) that can also happen (rarer but possible, at least the blood stuff).
So that ends the medical portion of this post. I'll be having out-patient surgery next week Tuesday, June 8 @3pm to put in a port that will go below my collarbone--that's how I'll be receiving chemo. The worst thing about out-patient surgery is that you can't eat for 6 hours prior to surgery and you can't drink anything 2 hours prior to surgery--UGH. But you know, compared with what I'll be faced with in terms of chemo and future mastectomy surgery, not a big deal at all.
Anyway, my parents will be able to go to my first chemo appointment with me on June 10 (Thursday)--they'll head back to CA on Sunday, June 13. I know folks have been asking "What can I do?" Laura & Jordynn are going to be organizing some Google calendars for future chemo help (mostly walking Bruno, dropping off food, and potentially taking me to my treatment if Matthew can't make it--so far he's re-arranged his work schedule to be able to be my chauffer). So if you're interested in getting an email about the google doc, leave a comment and I'll be sure to include you on the mass mail that Jordynn and Laura will send out (you do need a gmail account to access the calendar, so if you don't have one, you may need to contact Laura/Jordynn directly for help).
Finally, besides the chemo treatment and the cancer, the other big life event happening in May was THE WEDDING!!! So I'm going to end on a happy note by including photos from both the small ceremony we had with just immediate family that was held at the NC Museum of Art Park (we got married in the Lowe's Pavilion & took photos there and at the rings) and then the following day we had a party at Johnny's in Carroboro.
Jen & Matthew in the Lowe's Pavillion
Lizzie (Matthew's sister) was the officiant (we ordained her on-line!)
We're Married!
After the ceremony
Leaving the Park through the rings
Deepfried eggplant stuffed with pork (1 of 14 courses that we had as part of our Chinese banquet at Super Wok in Cary, NC)
Peking Duck
Lobster
The Wedding Party on Saturday @Johnny's (this is the jazz combo who played--they also play on Saturday mornings @Johnny's)
Explaining the 3 different cakes that we had w/the different phrases we used as decoration: "It's your turn to do the dishes" (on the yellow-chocolate ganache-almond buttercream frosting cake), "Can you walk bruno?" (on the lemon-lemon curd-lemon buttercream cake), and "Have you seen my keys?" (on the vegan chocolate-chocolate-chocolate cake)--the flowers were used as decoration compliments of my cousins Jeanine & Eileen!
Our friend Shannon giving a toast before we cut the cakes
Moving the party across the street to our house
Hanging out with friends
Me cleaning up at the end of the night
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