My new reality: low energy-no hair Jen

I know that in my last post I wrote about how bad the side effects of my last round of AC chemo had been on my system. And it was bad--the worst round and the worst side effects that I've had since I began treatment. To give you an idea, I basically spent my days following my last round of chemo (July 22) either prone or sitting up on the couch and watching Seasons 1-5 of THE OFFICE on Netflix on demand (I managed to finish all 5 seasons during this last round). I also usually took about 2 naps a day--one around 9-10am and another between 2-3pm for around 2 hours. And I was in bed by 9pm and awake by 6am--I'm told this is the schedule of many 1 year olds.

My fatigue has hit an all time high (or low)--again, at my lowest (which I'd say was Tuesday) I was at about 10%. And even now, the first day I've felt like I can sit in my office chair and return email messages and blog, I still feel slightly dizzy--my new reality is that I have no hair, I am constantly slightly dizzy, and I am constantly tired--which varies from being so fatigued that I can barely sit up to my current state, which is that I can do some light housework (like the dishes) but after any exertion I need to either sit or lie down and rest.

My other new constant is that I'm not very sharp right now. I am having some aphasia (substituting words for one another or grappling to find the right word or saying the wrong word and thinking I said the right word). I also find it hard to concentrate--especially reading--even reading fiction (I'm stalled on The Story of Edgar Sawtelle--which I was enjoying but can't find my way back into, not because of the narrative but because I feel like I have ADD right now and just can't concentrate).

My inability to focus has really thrown me. I'm someone who is usually able to focus and concentrate pretty well--so combined with my aphasia and my fatigue all combines to mean I'm not doing any academic work right now, because if I find it hard to concentrate on fiction, trying to do any critical writing feels really beyond me. Which also makes me a bit anxious. I mean, I know I need to just cut myself some slack--after all, chemotherapy is a pretty serious treatment to go through and my side effects are quite real. But I'm a critic--which means I'm critical--and the truth is, I'm most critical of myself, so it's hard for me to turn off the voice of judgment that says, "Oh c'mon Jennifer--you can work on the Tiger Woods chapter--JUST DO IT!"

[nod to Nike brainwashing through all the research I've been doing on Tiger who, lets face it, has been THE posterboy for Nike, taking over that mantle from Michael Jordan]

Anyway, that's all I wanted to share. I'm slowly making my way through the email messages I've gotten from folks, some of whom read this blog and others who find reading this blog too hard--which I get. I mean, I feel sad sometimes knowing that this is my reality so I can understand why someone else would feel sad reading about what I'm going through.

I do want to say that I have gotten such LOVING email and voice mail messages and cards (special shout out to Donna who sends me a weekly card which I so appreciate!) and the scrumptuous meals dropped off to our home and the folks who have walked Bruno and some WONDERFUL care packages! Wonderful aromatherapy lotion from my parents (Thanks Mo and Dad!); local farm products like honey and jam from Santa Cruz (Thanks Christine!), a beautiful head silk head wrap (Thanks Karen!); something that allows me to self-medicate and make it through the really hard days (which means that from Friday to Monday I was basically in an altered state in order to control the nausea--thank you to friends who shall remain nameless to protect their identity!); and some punk paraphenalia from my friends Paul and Rebecca who say that I should embrace my hairless state and just GO PUNK--so on that note, I leave you with a photo that I sent to them to demonstrate just how I feel about my cancer and my chemo (but please know, my sentiments are NOT aimed at any person or anyone reading this blog):


[Jennifer in a Ramones t-shirt giving the finger to cancer and all those stupid pink ribbons]

Last round of AC Chemo--woo hoo!

Yesterday was my last round of the AC chemo, which has really done a number on my system--especially in terms of the nausea and dizziness that comes along with it. It is apparently VERY HARD on your system--much harder than the upcoming Taxol chemo I'll be having on August 5. Anyway, I had the chills for the first time an hour after my chemo yesterday, and it did feel harder on me, both yesterday and today. The fatigue is bad--which my doctor did say seemed normal as a cumulative side effect.

So if you have emailed me and I haven't returned your message or don't return your message please forgive me--writing this blog post is about all I can think of doing this hour. Here's to hoping my energy level returns at least in the 50% range!

41% of people will be diagnosed with cancer in their lifetime

This is not a post about my health, specifically--this is a post about an alarming statistic I just read about from a report issued in May 2010 by the President's Cancer Panel Report, which is the most comprehensive report to date linking environmental factors, like chemicals, with rates of cancer. And one of the stats is that 41% of Americans will be diagnosed with cancer at some point in their lives.

If you are interested in reading the entire 200 page report, you can find it by googling "President's Cancer Panel Report 2010." For something more digestible, read Nicolas's Kristof's summation/opinion of the report--and a handy list of things we can do to try to limit the number of toxins in our lives, such as the following (which I quote, in full, from his article):

¶Particularly when pregnant and when children are small, choose foods, toys and garden products with fewer endocrine disruptors or other toxins. (Information about products is at www.cosmeticsdatabase.com or www.healthystuff.org.)

¶For those whose jobs may expose them to chemicals, remove shoes when entering the house and wash work clothes separately from the rest of the laundry.

¶Filter drinking water.

¶Store water in glass or stainless steel containers, or in plastics that don’t contain BPA or phthalates (chemicals used to soften plastics). Microwave food in ceramic or glass containers.

¶Give preference to food grown without pesticides, chemical fertilizers and growth hormones. Avoid meats that are cooked well-done.

¶Check radon levels in your home. Radon is a natural source of radiation linked to cancer.

Finally, a bit thank you to Donna for sending me the link to this article on environmental factors and breast cancer, which notes that the very powerful Breast Cancer support group, the Susan G. Komen foundation, is devoting $1.25 million to looking at the link between environmental factors and breast cancer--a major shift in the group's focus from not just treatment but actual prevention.

I really hope that all of you are in the 59% of people who do NOT get cancer in their lifetimes--because it sucks to be in the 41st percentile.

Why I want to turn in my membership card to the Cancer Club

So I know I've written about having "good" weeks and "bad" weeks, but unfortunately I think that the cumulative effects of the chemotherapy may tear down that breakdown--it's more like, right now, from days #1-9 I'm feeling fairly crappy and then now, on day #10, I'm beginning to feel somewhat "normal" again--which means my taste buds are coming back (vegetables no longer taste like dirt and Matthew's Dad brought over a bunch of fresh tree-ripened peaches that taste MARVELOUS to me, which is a huge relief), my energy level isn't totally zapped (although it is lower than what it has been on other day #10s), and my stomach, while still not 100%, is able to tolerate reasonable amounts of food.

All of which is to say, days #1-9 during this third round of chemo have been hard--and my nurse, Delma, confirmed that the last round of my AC chemotherapy (which happens this upcoming Thursday, July 22) will probably be even worse, in terms of my nausea, my fatigue, and my general overall well being (because a newish symptom I've been having are serious muscle and joint aches). I'll start Taxol in August, which apparently is not as hard on the system in terms of nausea--and when I expressed some concern about the muscle/joint pain/neuropathy that is supposed to be REALLY BAD with Taxol, my chemo nurses (and Delma) all said that given my relative fitness and the fact that I've been walking 1-2 miles every morning should mean I won't have much bad side effects in this regard.

So that ends the medical/health update portion of the post. What I really wanted to write about is how much I'm resisting the label of cancer patient and the standard narratives about cancer.

This, of course, is not much of a surprise since, after all, I named this blog "No Fucking Pink Ribbons" -- which essentially is me giving the middle finger to not just cancer but the particular culture of breast cancer that the pink ribbon emblemizes. But I mention this because it's almost as if I am in a form of denial. And what I mean by that, is despite what I KNOW to be true about my therapy--that I have poison coursing through my body that is *hopefully* killing off any microscopic cancer cells leftover from the lumpectomies in both breasts, that I am also looking for other reasons for why I'm feeling so poorly.

For instance, since the 3rd round has been harder on me, I've been more tired (exhausted really) and I've also been sore--my joints and muscles ache, like I've slept on a bad mattress or have worked out REALLY hard the day before and am achy all over. And lets face it, I'm sure it's the chemo that is making me both tired and achy. But what I thought, initially, was that this was a sign of me aging--that at 40, my bones just hurt. When I mentioned this to my friend Shannon (who was visiting from New Haven and who took good care of me while she was here), she laughed and said, "You feel sore because you have poison in your body that is making you feel sore!"

Obvious, I know. And yet, there is a part of me that doesn't want it to be chemo--that it would almost make me feel more "normal" if my ailments were a sign of something more normative--like aging. Never thought I'd be looking to feel more "normative"--since normativity is something I'm continually questioning in my teaching and research. But, again, there goes the limits of theory. Because when it comes to your health and your body, we all want to be normal--none of us want to be outliers (unless we're talking about stage IV cancer, and then OF COURSE you want to be in the minority of survivors--but I really *hope* I don't have to go there).

I also don't want to be part of any therapy groups or talk to any survivors--anyone who has been through this. Which is weird, I think. I mean, the researcher in me would think that talking to people and hearing about their experiences and learning from their experiences would be helpful to me. But, instead, I've balked. Actively balked. Many of you have offered for me to talk to various friends or family members who have had breast cancer. Very generous. But I really haven't wanted to know about other people's experiences of breast cancer. In fact, it has been easier for me to talk to other folks about cancer when it's NOT breast cancer (ovarian, colon, stomach, etc...). There is just something about the breast cancer club that I've had an allergic to.

Case in point: I've been going to yoga that is specifically for people who have had a cancer diagnosis--there are 2 places that offer cancer for yoga patients/survivors: UNC Lineberger Cancer Center (at their off-hospital site location at Carolina Pointe near the intersection of I40/Hwy 54) and Cornucopia House, this wonderful resource for not only patients and survivors but caregivers as well. I really like the yoga at Carolina Pointe, but at the Cornucopia House, well, that's a different story.

And it's not the yoga instructor--Doreen does yoga at both places. It's the vibe at Cornucopia House--it's this group of women, half of whom are survivors of either ovarian or breast cancer, many of them have been going to yoga for 2-3 years (and know one another pretty well) and they are a jokey, fun crowd who have a wealth of knowledge among them--of treatment issues and side effects and what life is like with tomoxifen. And I mean, they are wonderful women, and I can see the therapeutic value of not just the yoga but having this group of people to support you and that you can lean on and who will ask you about where you are in your treatment and can encourage you as you go through things, as you make it on the other side.

Yet the whole time I was there, I just felt freaked out. Unlike the Carolina Pointe class, this one begins with us introducing ourselves (I was the last one to speak). All the women began with their names, their type of cancer, and where they were in treatment and/or how long they had been "N.E.D." (no evidence of disease) -- and they ALL made jokes about NED--about whether they were dating NED, about the fact that NED gets around with the ladies, about how they all want to be with NED. I'm sure for many of these women, this time in yoga is something they really look forward to, for the exercise but mostly for the camaraderie (several of them before and after class were chatting and gabbing and catching up with one another).

But I didn't want anything to do with these women. When it was finally my turn, all I said was my name and that I had been diagnosed with breast cancer this past April. They were all nice and friendly and turned sympathetic eyes to me (I was the most recently diagnosed person in the room), but all I could think was that as soon as the class was over, I wanted to leave without talking to anyone--and I did manage to leave without talking to anyone, largely because I think I gave off this very intense "leave me alone" vibe.

When I mentioned my reaction to Beth, she said that it made sense--because I am rejecting anything that's "normative" with respect to breast cancer--because I don't want to be affiliated with breast cancer beyond what I'm already going through with the chemotherapy--because this is my way of taking control of the uncontrollable--because this is the way for me to get through so much that feels overwhelming--because I don't want a community of breast cancer patients or survivors, I just want the community of friends that I have already. And maybe I just don't want to be part of this new club that I find myself in.

Anyway, that's all for now. Hope everyone in the Triangle is staying dry -- thunderstorms projected not just through the weekend but through the week!

What do you do when your backup plan blows up?

This isn't a health related post, not really. But it does have to do with the side effect of chemo and cancer--namely what this means for Matthew and I in terms of my fertility (or lack thereof) and about the different back up plans we had talked about...which may no longer be as viable as we once thought. Anyway, this is a rather personal post. And I know I don't need to share this with all of you. To be honest, I'm not sure why I am compelled to write the things I do write on this blog space. But I think if there is someone I don't know--someone reading this who is going through this like I am, who prefers the anonymity of lurking in a blog to get information, well, maybe I'm writing this for that person because there are things that aren't noted very clearly in any cancer pamphlet or book--things your doctors may not know to tell you about because there are so many ways a cancer diagnosis can take over your life.

So back in April, I had written about a very hard day meeting my oncologist Dr. Carey for the first time (click here to read "The Limits of Theory? My Body." One of the reasons that day was extraordinarily hard was that the door to my fertility pretty much shut closed. I'm currently going through a temporary menopause (I haven't had a period since I started chemo) and once I stop chemo, right before the surgery and during my recovery, my menstrual cycle will resume--but then once I start tomoxifen (hormone therapy) for 5 years, I'll go into early menopause. So that's that.

And while it is sad--I mean, Matthew and I had hoped to try to have a baby this year--the reality of me being a 40 year old woman trying to get pregnant after fibroid surgery...well, 40's no 35 or 30. So Matthew and I always had a back-up plan. We always talked candidly about adoption. And given my ethnic heritage and culture in China--and given the fact that I had been tracking one adoption agency in China over the last twelve years (it's an agency that was founded by a woman whose kids went to school with my cousins in Piedmont--my Uncle knew her) then I felt pretty confident that adopting a baby from China would be a good plan B, with maybe open adoption domestically being something to also explore as a third choice.

But here's the thing. Now that I have cancer, I did wonder if it was going to be like my ability to get life insurance (because I didn't have any before, and yes, I did look into it, but I figured it was something to worry about after Matthew and I were married and after we had a child--I mean, who THOUGHT I was going to get breast cancer???!!). Anyway, when I called my State Farm Rep she said that she'd only be able to create a policy for me in 10 years--meaning once I've been cancer free for 10 years.

Turns out, China has a much harsher taken on your ability to be a parent if you have a cancer diagnosis.

Here are the list of health issues that prevent you from adopting a baby from China:

* Diagnosed with major depression or any other severe mental health concerns;
* Current diagnosis of depression or anxiety or currently on medication for depression or anxiety. Must be treatment and medication free for over 2 years.
* History of alcoholism within the last 10 years;
* Any major surgery or transplant within the last 10 years; contact our office with questions.
* One or both parents use a wheelchair or mobility aid; or missing limbs.
* No history of cancer
* No disease in infectious stage.
* If either parent has a severe disease which requires long-term treatment and which affects life expectancy, like malignant tumors, epilepsy. lupus, nephrosis, etc.
* No blindness. No deafness unless adopting a deaf child.
* BMI over 40. Use this calculator to determine your BMI

[taken from this website, China Adoption Agency]

I should note that they don't have it properly noted on this list--you can't adopt if you have a history of cancer--although the phrasing here makes it seem as if you cannot adopt if you have NO history of cancer--as if for some strange reason they were only placing children into adoptive families who have a cancer diagnosis--and yes, that's the pedantic English professor in me who is feeling very pissy with China right now.

This "no adopting if you have cancer attitude" was reinforced in this website as well, (click here)-- although it does note that every country has different rules and that the U.S. at least DOES let you adopt if you have cancer, unlike the U.K., where if you have the big "C" forget about ever adopting a child (click here).

So this weekend turned out to be another "post-chemo-hard-side-effects-cluster-fuck-in-my-head" kind of weekend. And boy, if I thought that mourning the loss of my hair was hard...this kind of loss really cut me to the quick.

Because it's not just that Matthew and I were set on adopting from China and now that's totally taken off the table and we're devastated. It's more than that. It's the fact that this back up plan--this plan I had allowed myself, FOR YEARS, to think of as not just a back-up plan but a VIABLE plan--because I always only wanted to have one from the womb (that was the motto--two kids but only one from the womb) meant that I always thought adoption was going to be the other route towards making a family. And I always thought that China was on the table--and that for a host of ethnic and heritage and cultural reasons it made sense.

So to have both the biological and the #1 back up plan be taken away...well, it sort've hit me smack in the face--the real loss of not being able to start a family with Matthew the way we had hoped. The way we had planned. It's not that I think it had to go marriage then bio baby and then adopted baby. It's not that I think that because we're now legal and married we need to have this family. It's that we really love each other and we've wanted to make a family together because we have a big space in our hearts ready for this kind of challenge and commitment and love. So the realization of my cancer diagnosis, all the treatments that are going to happen (chemo and surgery) and then the loss of fertility coupled with this new news about not being able to adopt from China? Lets just say I was sobbing non-stop for about 2 hours.

But you know, it's going to be OK. I mean, I don't exactly know how it's going to happen, but I believe that Matthew and I were meant to have a family--we were meant to be parents. And maybe it won't be the way we thought, but at the end of the day, I think however it happens, it will be great. I'm not trying to put a nice shiny spin on this--although it is perhaps my general "glass-half-full" attitude coming out. Or maybe it's the pragmatic side of me. It's not as if we can go and start adoption procedures right now. The first step is for me to get healthy. That's going to take some time. And as heartbreaking as it would be to have to wait 5 years--if an agency wanted a 5 year remission rate before starting paperwork--there's a part of me that understands the logic of that--you want to make sure you are placing a child into a home under the best possible circumstances.

And maybe it's my cockiness. But I can't imagine that at 46 I'll be any less high energy than I am now at 40. So if it's a baby at 46 then so be it. And if anyone has an opinion about this particular adoption agency (click here) I'm all ears.

Blame it on the roids

I've been feeling really irritable lately. Which isn't going to be surprising since there's a lot of irritants in my life right now--and they start with "C" (Cancer, Chemo). But I have noticed a pronounced feeling of rawness--of wanting to snap and people and from going to zero (where that's me being calm and normal) to 10 (which is me enraged like a lunatic) at the snap of a finger. Like a bull seeing red.

I've been feeling bad about this because it's poor Matthew who is getting the brunt of this. And I just can't seem to control it. Which is when I realized that maybe this is related to the chemo drugs. And sure enough, when I asked my nurse Amy about this, she said that definitely the chemo had something to do with it but that more importantly it is the steroids they give me at the start of the chemo (and that I take for a total of 3 days) that is probably also affecting me.

In other words, I have roid rage!

WOO HOO! Yet another emotion to manage while I'm on chemo.

A friend has actually written, jokingly, and suggested the limits in which I can push playing the "cancer" card--as in: "Officer, I"m really sorry I was speeding but I needed to go to the hospital because I'm having chemo today" (and then for special effect I could whip off my wig). Or another friend said I should try shoplifting and then if I got caught, I could explain that it's the drugs I'm on for chemo and that I'm terribly sorry.

I did notice when I had to return some multivitamins to Weaver Street Market the other day that when the cashier asked me why I was returning them and I explained that I was going through chemo and my nutritionist...and honestly that's as far as I got before she said, "OK" and just rang me through. So I didn't have time to explain to her that even the nice whole foods Rainbow brand expensive as hell vitamins they sell there aren't good for folks like me undergoing chemotherapy (apparently this brand has red clover and red clover has contraindications with my chemotherapy regimen). I think the moment she heard that magic word "Chemo" she promptly gave me my refund--facilitated, perhaps, by the fact that I was a bit ashen (we stopped at Weaver Street Market right before the acupuncture appointment the same day I had chemo) and was leaning on the counter pretty heavily, like I needed it to support me, because honestly, I needed it to support me.

Part of the problem with looking relatively healthy (and I blame this on the wonderful tan I got from being out on Ocarcoke for a month) and the wonderfully natural looking wigs that I wear is that I don't appear to be sick or need help. And yet, especially with this most recent session, I do feel like I need a little extra help and am really tired. So if you do see me around, esp. in one of my fab wigs (and there will be a post on hair stories later) then just remember that I may look good, but I may just not be feeling good, so offers for me to sit down or lie down (if there is a couch) are greatly appreciated (as are offers of something to drink--I need to keep as hydrated as possible).

It's getting worse and the needles aren't helping

This is going to be a brief post. I had my 3rd round of AC chemotherapy today--Mai was kind enough to keep me company while Matthew was at his stats class. Like usual, I felt the effects right away. And I had my 4pm acupuncture appointment. And during acupuncture I felt better--I mean, I was still really tired/fatigued, but the nausea wasn't bad, at all--in fact, I felt fine in my belly during and then 10 minutes after the treatment.

But then, on the way home, I started to feel bad.

And then, when I got home, I immediately went to sleep.

And as I was waking up, or rather, what woke me up was that I thought I might have to rush to the bathroom because I felt so nauseous I could throw up (but I didn't).

To top it off, I'm either having an awful allergy attack or I caught a cold--my nasal passages are semi-stuffed up and I'm sneezing and constantly blowing my nose (sigh).

My symptoms seem to be getting worse as the chemo accumulates in my body. The only thing I am *hoping* for is that the taxol will be easier on me--I've been told by the nurses that it will (at least in terms of the nausea) and that the muscle and joint pain may not be something I experience because I'm relatively fit and I walk 1-2 miles every morning.

So that's the latest from me. Will try to write more about how I'm doing when I start to feel better.