Search This Blog

Tuesday, August 31, 2010

My fuzzy brain--lets hope it's temporary

So today's update on my physical symptoms include some shortness of breath, dizziness/light-headedness, increased neuropathy (lack of sensation) in my fingertips and some pins & needle sensation in my back that is intermittent, and then the usual fatigue/exhaustion. I'm no longer waking up at 5am and 6am--now I'm sleeping 9-10 hours a night, which is definitely unusual for me--I'm typically a 6-8 hour person. I think the combination of anemia and chemo are responsible for the first two symptoms, which are relatively new--the Taxol is responsible for the pins & needles/neuropathy. I've decided to not drive right now because I figure that trying to shift (I have a manual transmission) and steer when I'm having neuropathy in my fingers is not such a smart thing. Add on the light headed issues and I think that everyone is better off with me off the road.

Anyway, what I wanted to write about today is a concern that I've been having ever since I was 2 treatments into my chemo and started noticing that my cognitive abilities had changed--that my memory wasn't what it was, that I was substituting words (sort've in metonymic/synechdochal fashion, things like when I wanted to say "stove" but instead said "oven"--although that's more relational than metonymic/synechdocal)--also, just now I realized that I typed "every" for the word "ever" and started to write "know" for "now"--which I know may just be simple typo stuff, but it's not just that--it's something else going on in my head.

I know I've used the phrase "chemo brain" before and explained the phenomenon in some past posts, but I decided to do some light researching of this term, and here's what I found:

*A description on the American Cancer Society's site (click here) that gives details about the phenomenon.

*A two-part New York Times series on the details of chemo brain (Part I) and the treatment of chemo brain (Part II).

*A whole website called devoted to the phenomenon which goes by the medical term "Cancer-therapy associated cognitive change" (sort've a mouthful, so I'll stick to chemo brain for the time being).

Now, I want to reassure everyone--I'm not nearly as bad as some of the folks in the New York Times articles. I have not driven away forgetting my groceries or Matthew. I am still able to multitask (albeit slower than normal and perhaps with less balls in the air), and my memory is not that impaired.

However, I feel I am not as sharp as I used to be. Really--I'm not. I just know it. You know when you know yourself really well and you feel off? That's how I feel--mentally, I feel off. I'm not as quick. It takes me longer to process information that I read and hear. And most notably, I have not had any real interest in working on anything too intellectual. Now, I KNOW I'm on a medical leave of absence and I do NOT have to be working on my Tiger Woods chapter. But perhaps it's the academic in me--perhaps it's that I want to feel more "normal" and what I'd be doing right now if I wasn't going through chemo is teaching and writing so I want to feel like I'm my old self--or perhaps I'm just one of those crazy/driven people who always feels she has to be working. Whatever it is, there is a nagging in the back of my brain that says I should try to work and try to write. But I'll be honest: I'm afraid. Because I don't feel sharp right now. Because my level of concentration and focus is not what it used to be. Because sometimes just reading and replying to email messages is more than I feel up to, energy wise.

But really, what I fear is that right now, if I tried to write, I wouldn't sound smart. I wouldn't be smart. I would just make random points that aren't coherent or fully analyzed or that say anything. That I'd just be writing jibberish.

But above all, what I'm worried about is that this fuzzy, foggy feeling in my brain will be permanent. That I'm going to be one of the 50% of people who have lingering chemo brain side effects. And that scares the hell out of me because my brain is my bread and butter. Thinking well is what I've always prided myself on--and along with thinking well, writing well is also top of the list, and lets face it, the two go hand in hand. What happens if I'm only able to focus for limited stretches, if my cognitive sharpness doesn't return? If I'm quite simply permanently brain damaged from the chemo? The loss of my hair was traumatic--but at least I knew beyond a shadow of a doubt that my hair would grow back. This chemo brain business--this is frightening to me. And I suppose I should be grateful that I am only experiencing a mild version, mostly in some light memory issues, some aphasia, some concentration and analysis slowness.

Yet for someone who is used to be highly functioning in the mental category--whose mind has served her well--very well--in years past, this all feels like a big deal to me right now. And I know if it's permanent I'll manage. I already do a lot of the things that they recommend to help with chemo brain; I suppose being hyper-organized before chemo helped. But it's my ability to make connections--to make intellectual connections and analyses that I fear may be impaired. I suppose only time will tell.

And now, just to show that my sense of humor isn't impaired, here's something to make you laugh:

Tuesday, August 24, 2010

My life, my death, and other existential musings

[Health Update: I'm beginning to feel neuropathy (tingling/loss of sensation) in my fingers, which makes me feel arthritic, and I have a fair amount of pain/discomfort in my joints and muscles, but for the most part alleve and percoette take care of those Taxol side effects--which shouldn't last longer than another day or so. I'm definitely anemic and if my platelet count drops lower will probably need a transfusion and will need to postpone chemo, which also means I'm very fatigued lately. But other than all that, I'm doing OK--my brain is less fuzzy on Taxol than on AC, and I'm really *hopeful* that chemo brain is temporary!]

I've been thinking a lot about my death lately. I don't mean to be morbid and you shouldn't worry. It's not that I think that my cancer will spread and I'll be dead in the next five years. I mean, sure it could happen. But at this point, that scenario feels only slightly more likely than the one in which I am killed in a car crash. In other words, generally speaking I feel hopeful and positive about my cancer treatment (both drug and surgical related) and my chances of survival (remember, it's 84% survival rate for folks with stage 2 breast cancer), but lets face it, a cancer diagnosis and going through the rigors of chemo does leave one -- or rather leaves me -- thinking about my own future demise.

Because the reality is, whether it's cancer in the near or far future, another fatal disease, a fatal accident, or the rigors of aging, I will die. We will all die.

And I say this not to throw a dark pall over everyone--and I hope this doesn't freak anyone out, those of you who have a natural fear of death and dying, a natural denial reaction to our human state--but I've just been thinking about my mortality lately--and about what the end may look like, feel like, and more importantly, what I want to have done--how I want to have lived--before that day comes.

I've been watching films with certain death bed scenes--and both interestingly enough are films of stage plays that feature the luminous Emma Thompson: Wit by Margaret Edson and Angels in America by Tony Kushner. I don't want to give too much away for anyone who hasn't had the pleasure of seeing either/both plays, but lets just say that there are characters who die in hospitals in both--and whose deaths are portrayed rather starkly. And it didn't freak me out at all to witness this, perhaps because I assume (hopefully correctly) that my end will not look like that. I do not anticipate dying alone and lonely in a hospital room, in pain or in a coma. I don't anticipate living a life in which I would have no loved ones at my bedside--and I would hope that I still have the option of either hospice/palliative care so that my end will not be as grim.

But as I said above, it's not so much what my end will look like, who will be with me, how I will feel, or what my last words will be (by the way, there's an interesting This American Life piece on "Last Words" if anyone is interested in listening to it), so much as what do I think my life will be like before I die--what will I have accomplished and how will I have lived?

And one thing that I feel blessed is that I think I've lived well. What I mean by this is that I really don't have any complaints or huge regrets. I've been very lucky--to have a profession I love, I have loving family and friends, and I live in a developed nation and have resources, economic and otherwise, that enable me to lead a very comfortable life.

Of course, this doesn't mean that I'm ready to go. And I'm not going to give you a list of things I hope to do before I die. I don't really have such a list--a bucket list if you will. I mean, yes, it'd be nice to walk on the Great Wall of China or to see Angor Wat. I'd like to raise a child and to finish my book. But I think what I'm trying to get at more is a spiritual or existential sense of what I'm doing here and what I want my life to mean, to count for.

And what I wonder is, what should my life be for? Clearly I'm not all that interested in increased wealth--being a university professor is not going to put me in the millionaire club anytime soon. And I hold no delusions of academic fame, which has to be taken with a grain of salt because being famous in your field of study really has little cache outside, well, your field of study. Do I hold delusions of philanthropic or pedagogical grandeur? Do I secretly wish for my Mr. Holland Opus moment? To be that inspiring professor who changes people's lives? Again, it seems fleeting and ephemeral and perhaps not the point of being a good teacher if you are hoping to get accolades like that.

So is it enough that I just try to be a good human being? Is that, perhaps, the thing that I should be focused on? Not worrying so much about career advancement or "making a difference" in the world, but simply to follow the medical oath of doing no harm. But is that really all that I should be thinking of? Shouldn't my life be more than just doing no harm--shouldn't I have goals and ambitions, dreams and desires, that I work towards? Isn't that also part of being human--to have want, to want things.

I don't really have any other words of wisdom (and who am I kidding, these musings are more random than wise) other than I do know, to return to the deathbed scenario, what I don't want.

I don't want to have regret. I don't want to have lived my life not doing things out of fear. I don't want to live a life without compassion and empathy. I don't want to live a life without passion and engagement. I don't want to live a life without intellectual curiosity and the pleasures of savoring meals in the company of people I love. And I don't want to live a life where I didn't try my best.

And maybe it would be nice to go to Tuscany too...

Friday, August 20, 2010

2 down, 2 to go

Yesterday I had my second round of Taxol chemotherapy. As I noted in this previous post, the Taxol is SO MUCH EASIER on my system than the AC chemo. It does take twice as long to administer, which means I was in the chemo chair from 10:15-2:30pm. I'm also having some anticipatory nausea (ie: psychosomatic reaction that is all in my head because of the awful nausea I had during my first 4 rounds of AC chemo), so they've been giving me atavan to break the cycle, which means that combined with the pre-chemo meds (including benadryl) that they give me for Taxol, I'm crashed out and asleep for a good 2 hours of the 3 hour infusion. Thankfully Beth, who is visiting from the Bay Area, was by my side and had her laptop to keep her busy while I slept (she is working on the new yoga company she is developing--"bendy berry yoga"--a yoga studio for kids! If you're in the bay area and you have little ones, you should definitely check it out.)

Anyway, the visit with my oncologist that preceded my trip to Chemo Infusion chair #30 was pretty much uneventful. We went over my latest bout with the allergic reaction I had to the antibiotic that sent me to the ER and then discussed my lab levels--OK on the WBC, but your WBC don't tell the full story of your immune system, so I still need to be careful about contaminants/germs, which also means if you are planning to visit, probably best not to do hugs for the time being and I'm going to be extra stringent about asking folks to do the antibiotic hand wash thing. My RBC are a bit more concerning--my platelet count is REALLY low--as in, I should be avoiding all sharp objects and if it goes much lower they are going to have to postpone my chemo for a week or two until I'm back up to safe levels (sigh). I REALLY hope it doesn't come to that, but my slight anemia (which is how Dr. Carey is calling it) also explains the extreme fatigue I have been having, which she confirmed is also a result of the cumulative effects of 8 rounds of chemo (or as I like to think of it poison) in my body.

For Chemo #8 (or 2 of 4 remaining Taxol treatments) I actually had about as pleasant an experience as you can have stuck in an in fusion chair. Beth was with me (always a plus), we had peanut butter sandwiches with artisanal strawberry jam from the Santa Cruz valley sent by my friend Christine in a prior care package (so yummy!), my chemo nurse, Elizabeth, was sunny and sweet without being saccharin, and this really wonderful volunteer, Paula, came over to find out if we needed anything, remembering the scrabble match I had gotten into (and barely lost!) with my friend Shaun who was visiting from Seattle (of course now that Shaun's in Seattle I can't have a rematch with him for a while--CURSE HIM!!!). I asked Paula why she decided to become a volunteer at a chemo infusion ward, and it led to a really lovely conversation among the three of us about Paula's experiences with cancer in her family (like mine, a very high rate on her mother's side), her current second-career training as a yoga instructor--and here's where she and Beth got along like gang busters and chatted about the local instructors and training and compared notes. Anyway, Paula is a fantastic volunteer--really personable and friendly and warm, but not too intrusive and respectful of your personal space but also really helpful (she's the one who usually comes to get me gingerale and a nice warm blanket!). And then after my 2 hour nap, I woke up to find Howard, another volunteer, swing by to see if I wanted a hand or foot massage, so for half an hour Howard chatted with us about California and food.

[We recommended The Slanted Door, this AMAZING Vietnamese fusion restaurant in the Ferry Building on the SF Embarcadero--if you are ever in SF you should call a month ahead and see if you can get a reservation at The Slanted Door--the food is incredible but the views are even more spectacular--3 walls of glass, two of which face out to the bay with a view of the Bay Bridge--C'est Fantastique!]

After the foot rub, Beth handed me a card for my next appointment time that TaShawna, the scheduler for all of Dr. Carey's appointments, had run up to me while I was napping. Normally you're supposed to wait before you head up to chemo to get your next appointment time, but TaShawna was backed up, so when she saw me, she just took my paperwork and said she'd handle all my appointments and run them upstairs to me. I mention this because I have really found every single staff person, nurse, doctor, and volunteer at the Lineberger Center to be unfailingly helpful, friendly, and in many instances, are folks who go out of their way to make the whole dreadful experience much less dreadful. Just little things--like having TaShawna being willing to run up my appointments to me so I wouldn't be held up from having chemo, was really nice. And whenever I go into either the oncologist's office or the chemo room, the nurses, whether they are specifically assigned to me or not, often will pop their head into my room to say hello or ask how I'm doing.

And I have to say, having that level of care and support--and having so many of YOU, my dear friends and family, send cards and email messages and phone messages and care packages, have meant THE WORLD TO ME as I make it into the home stretch of my chemo treatment--as the title of this post says, 2 down and 2 to go.

Finally, I'm leaving you with a photo I took of myself for my dear friend Karen Seto--who sent me this beautiful silk head wrap. I had actually vowed never to wear one, but I must admit that when I put this on, I thought it was really beautiful and so comfortable, so who knows, maybe I will rock the scarf from time to time!

P.S. If there are any scrabble players out there who have an hour to kill, I'm jonesing for some scrabble action--and while I suppose it's impolite to trash talk before we sit down across a scrabble board, let me just say that I fully intend to beat you BY A LOT and even if I don't (as I readily admit that I lost to Shaun by 30 points) I will beg to replay you until I get a win! Yes, I am a COMPETITIVE PLAYER--is anyone surprised???

Saturday, August 14, 2010

My eventful Thursday

So this past Thursday was a "no chemo" Thursday (which means this upcoming Thursday I will have my 2nd round of Taxol in keeping with my every-other-week schedule), which should have meant I'd be lying low at home. Except it turned out to be a very momentous Thursday for two different reasons:

*I turned in my tenure file!

[I have to turn in 5 files -- 1 in-house and 4 for the external reviewers]

Matthew helped me to turn in my files and then we had breakfast at the Carolina Inn to celebrate since I was craving buttermilk pancakes.

So the rest of the day was spent at home napping, reading, watching Mad Men, and eating dinner until...

*I had to go to the emergency room at UNC Chapel Hill Hospital because of an allergic reaction I had to an antibiotic they put me on.

The story of why I'm on antibiotics is too long to get into--the short version is that I developed an infection (the reason I was running a low grade fever -- which actually persisted into Wednesday). On the advice of my oncology nurse I went to see my primary care physician, who put me on an antibiotic I had been on once before (this is key) and after taking 3 doses over a 24 hour period, I developed a rash on my torso, which really were hives, that then spread across my limbs (and are currently everywhere from my scalp to my palms to the soles of my feet and everywhere in-between). The hives started at 8pm (an house after I took dose #3) and I immediately took 2 benadryl (I've had this happen to me before--I'm also allergic to clindamyacin and penicilin and have had the same thing happen both times), but at 9pm I realized that I was feeling a slight swelling in my throat, so at 9:30pm we headed to the ER since I figured it was better to be safe than sorry--after all, the worst thing to happen would be to fall asleep and have my airway constricted and die in my sleep.

But I really did wait half an hour and think carefully about this because I HATE BEING IN THE ER. And I have to tell you, the one at UNC is particularly daunting, maybe because it's a large state funded hospital, but it is very chaotic, the rooms are not clean, it's clear their housekeeping budget is very low, and lets just face it, you don't want to the be in ER unless it's absolutely necessary.

Anyway, after observing me for 4 hours and making sure I could still breathe, they gave me some medication to deal with my hives and swelling (and a prescription for 4 days worth of stuff to help deal with the hives) and an epi pen--which I'd been meaning to get anyway since I think it's a good idea for everyone to carry an epi pen--especially teachers because lets face it, one of our students could swell up and stop breathing because of some allergy that they don't know they have and so it's useful to have one handy.

Now the reason I mentioned being on the antibiotic before, is that according to my doctor, a drug allergy usually occurs after you have been exposed to it once before (or to a similar protein). So now I'm covered in hives, still dealing with a low grade fever, and hoping the new antibiotic will take care of the infection and NOT develop into an allergy.

So in a nutshell, I'm doing OK. I mean, things aren't great--I am sleeping more since I'm on double doses of bendaryl and having a low grade fever isn't great (so if anyone is sending me email or calling and I don't respond, this is why) and I have my next round of chemo to look forward to (sigh) but at least I don't have to worry about not breathing, the hives will clear up within a week to two weeks, and hopefully the infection will clear up in a week, and since the Taxol doesn't leave me nauseous or as foggy as I was before, I'm able to actually enjoy reading fiction. So all in all, it could be worse, this is what I tell myself at least. After all, I am a glass-half full kinda gal.

Tuesday, August 10, 2010

My body in pain

Apologies to Elaine Scarry for riffing off her title, but I have been thinking about pain and my body lately since I have been experiencing the side effects of Taxol.

I would say that I'm a textbook case for chemo, both AC and Taxol, meaning, if there is a drug side effect, I'm more than likely to feel it. So when the nurses told me that possible side effects of Taxol would include joint and muscle pain, which would begin 2-3 days after chemo and last 4-5 days, I wasn't surprised to find myself, on Saturday afternoon, with joint and muscle pain.

Now, I have to say, if I had to choose between feeling nauseous and having joint/muscle pain, I'd gladly choose the latter (well, maybe not "gladly" but I absolutely HATED being nauseous). The nice thing about Taxol is that there really isn't any nausea involved, although the power of the mind is incredible. When I was in the chemo chair getting my pre-meds (a round of steroids and liquid benadryl with saline) I started to feel queasy. The pharmacist was making her rounds just then, and I asked her whether or not this was a psychosomatic response--to which she said, more than likely since there was nothing they were giving me that should make me feel nauseous. But my body had been so conditioned to reacting in a certain way whenever I was in the chemo chair--to feeling nauseous the minute I started to get any drugs, that the queasiness was probably an anxiety reaction as well as psychosomatic reaction. The pharmacist, Chris, was hopeful that if I could break the cycle--have a non-nauseous experience in the chair, then I wouldn't have the reaction the next time.

It seems amazing that our minds are so powerful that they can elicit a response in our bodies. Which brings me back to pain. As I've felt the aches and pains of my joints and muscles, I've wondered if I can just sit with the pain or breathe through it. I've taken alleve and extra strength tylenol and when it's been really bad percocette, but I've also tried to just sit with it--to see if it can be a mind over matter situation.

The problem with pain, however, is that when you are experiencing it--you just want it to stop. You want relief. You don't want to feel achey and sore (and just to let you know, my pain has not been acute for the most part--it's more like the kind of aches and soreness you experience when you are running a high fever). So it has been hard to just sit with it--because the alleve, tylenol, and percocette dull the pain but don't remove it from my body. The other thing about pain, though, is that it makes me feel my body--to think about all the ways that I take for granted how I literally move in the world. I mean, how many times do we think about our hip muscles or our backs or our calves, until we feel a twinge or an ache or until these various parts of our bodies no longer function the way they used to. As my body has experienced these various aches and pains, I've tried to really think about how often my body used to work well in the past--and how hopeful I am that when the side effects of the Taxol are over, when the chemo is through, when I'm finally healed from the upcoming surgery, that I will forget the pain I'm currently feeling. Because that's the thing about pain. It's so easy to forget what it felt like once the experience is over, a blessing I suppose because how terrible would it be to remember, viscerally and literally, the experience of pain once it has subsided?

Finally, to wrap up, I'll say that yesterday may have been the worst I felt during chemo. The joint and muscle pain was intense and intensified because I was running a fever all day, one that moved from 99.8 to 100.8. I called my nurse Delma, who told me not to worry about the fever until I reached 101.5 or higher. At that point, they become worried that an infection has set in, either respiratory or UTI. So I took tylenol and then basically shivered it out all day. Even though it was 94 degrees outside, I was in sweats and had 2 blankets piled on top of me at one point. But my fever finally broke around 11:45pm last night, and so far I seem to be out of the woods, so no emergency room or trip to the doctor's office for me today (knock on wood!).

Friday, August 6, 2010

Taxol is not as taxing -- THANK GOODNESS!

So yesterday I had my first round of Taxol in the chemo chair. The 2 months of AC chemotherapy had me so nauseous, exhausted, and dizzy that even by Day #14 (which was Wednesday) I still woke up tired and needed to nap and just felt bad for most of the day (sigh).

So yesterday I was really *hoping* that everything that the nurses and doctors told me about the Taxol (which was the next chemo treatment they are starting me on for the next 2 months) was going to be easier on me than the AC. And so far, I think they are right!

Anyway, here's a photo of me in the chemo chair:

Matthew took another photo of me because he thought I didn't look happy--to which I said, "Who could be happy in the chemo chair?!" but I obliged and smiled for the camera:

[notice my "strawberry syrup wig!]

And in addition to Matthew our friend Shaun Lopez came from Seattle via DC to help see me through the first round of Taxol--so here's Matthew and Shaun hanging out with me in the chemo ward:

[What you don't see is the scrabble board -- Shaun and I played a match and unfortunately he beat me by 30 points, but I put up the best fight that I could while being infused with chemo, a bunch of steroids and liquid benadryl]

So one of the concerns about Taxol is that about 30% of people will have an allergic reaction to the chemo drug, so they give you a bag of saline solution along with benadryl and steroids to help prevent against these reactions, but it turns out that I did have a small reaction--I felt like my throat was getting scratchy, and I also noticed that it was a bit hard for me to swallow. And as soon as I told my nurse, they turned off the taxol, let the side effects subside, and then starated em back up.

Because this was my first time with Taxol they gave it to me s-l-o-w-l-y. How slowly? I was in the chemo chair at 10:15am and didn't get up until 4:15pm (sigh).

Anyway, I can tell you that Taxol IS easier on me. My stomach still doesn't feel great--I did feel a little queasy afterwards. But NO NAUSEA! And my fatigue level is even lower--partly because it turns out that the anti-nausea meds that they gave me for the AC made me fatigued. But I don't have to take any of the anti-nausea meds unless I really need them. And so far, I don't need them.

Unfortunately my exhaustion is probably going to be a constant--my red blood cell counts have dipped below normal levels--just barely below normal levels, but none-the-less the reason, at least according to my docs, that I'm probably feeling tired all the time. But since I don't really have any place to go and anything to do, I can just continue to take naps, watch MAD MEN on Netflix (I'm making my way through Season 2) and finish reading some good fiction (I'm half-way through EDGAR SAWTELLE). Hope every is keeping happy and healthy and well!