I receive a lot of email about breast cancer. Back in the "early days" I signed up for just about every newsletter and blog that I could find about the subject. I needed information and I needed a lot of it. I needed to feel like I was making the right decisions and doing the right things. In all honestly, I don't read most of it anymore. Unless something is pressing on my mind, I try my best not to overload myself on all things breast cancer. But every now and then a subject heading grabs my attention before I delete the message.
One of the newsletters I received about a month ago was an announcement about a writing contest for a story about the most important breast cancer lesson I've learned. Initially, I thought it was a grand idea and planned to submit a brief response. As time went on, I actually forgot about the contest and by the time I remembered, the deadline was just about here. Well, the deadline has come and gone and an extention has come out...but until this morning, I just wasn't sure that I really had anything to say.
There is so much that I've learned and I'm not actually sure that all the things I've taken away from this journey so far have been good lessons. Like...I really am working on believing that a relationship can be sustained throughout this sort of stress. It didn't happen for me. And I know a lot of other people whose relationships did not make it through breast cancer treatments. But then, I think about husbands like JG who are doing all that they can to support their wives through this process and I try to un-learn my belief that its not possible. And Fran's husband, who was by her side every step of the way. I know that there are guys who can deal, relationships that will survive this sort of pressure and that makes it easier for me to believe that I still may find someone to love after all.
I've learned good things... that my family really loves me, that my mother is spectacular (even when she's cranky or I'm cranky), that I don't have to try to be superwoman all the time. I've learned a lot about myself, about family and friends, about expectations, disappointments and the medical system. I've learned a lot about health insurance and about my own resilience. But this morning, I read a painful email from a sister I have yet to meet who was recently diagnosed with breast cancer. She is related to a friend and former colleague of mine. And she's absolutely terrified. Briefly chatting with her this morning by email reminded me that I have truly come a long way. Much farther than I ever would have imagined possible 15 months ago.
I learned this morning that even after all that I've been through, all the ways that I feel that cancer has robbed me of so much...it has not succeeded in taking everything from me. I am resilient enough to still be standing a year later. I am resilient enough to take from my own experience and share it with others. I am resilient enough to accept that I still have a few more chemotherapy treatments of my own, and more surgeries in my future...and know that maybe the best gift I can give another woman in my situation is my ear to listen and a hug (real or virtual) if she needs it.
Although there are many days when I feel like a shell of myself, there is still enough left over after breast cancer, for me to give to someone else.
I'm not entering the contest. Primarily because I don't feel like it really. (laughs) But it was a good thought to consider deeply as we move into breast cancer awareness month.
I have learned that I am strong...even when I'm weak.
I've been sleeping pretty much all day. Last weekend, I zipped up to New York City because I scored tickets to see Paula Deen taping a new show. I completely adore that little lady. The taping was a real treat and the bonus was getting to hang with my cousin Candice all weekend as well. We had a blast. Paula is just as cute live as she comes across on television. I was sad that she didn't cook for the taping, but just being able to watch her was a real joy.
I had a busy week at work and like the energizer bunny, I kept going and going and going...with the plan to do nothing this weekend but rest and do laundry. Well, Saturday is gone and the laundry is still staring at me. I suppose I will get to it tomorrow. Honestly I have no choice. I knew I was running low on energy when I found myself completely disinterested in any Congressional Black Caucus events. Usually I can get excited by the end of the week to make it out to one or two events but not this year. Everyday I dragged myself home from work and went straight to bed. Each morning I woke up feeling like I had not slept much the night before. By Friday, I was really moving slow and could not wait to get home and get in the bed so I could just sleep.
I am in a weird place (again) mentally. Seems like I live in the "weird place" now. I set my mind on the idea that I needed to cram in as much fun as I could before my surgery. Recuperating for 2 months is not my idea of a good time. But like an over-eager dummy... I've gone way overboard in my planning. I have now been to Texas and New York in the month of September. The month of October is mapped out with trips to Atlanta and Vegas. Back to back weekends in Vegas at that. Judging from the way my body reacted to my flight to and from Houston...I'm worried about all this flying next month. But I intend to go on all of my scheduled trips. Just have to balance things out by acting right in the other aspects of my life.
I have to be really honest with myself. I'm eating everything WRONG, not resting enough, not exercising my arm, not massaging my arm... just not living right and paying the price I suppose. I haven't been doing my regular walking...just nothing. The trip to Houston was fun but the swelling that occurred afterwards was not cute. I really need to get my butt out every day and walk or run but the energy just isn't there. I want to wake up early enough for a 30 minute walk every morning but it never happens. My alarm starts going off at 5:20 am...and I drag out of bed usually just before 7:00 am. Its crazy. But I will work on doing better. I have to find a way to workout regularly. I am packing on some pounds these days. I wasn't aware that one of the side effects of my herceptin treatment was weight gain but it seems that it is.
From what I've read on the breast cancer message boards, gaining weight on herceptin isn't unusual. And all of the other side effects... runny nose, peeling/splitting nails, tingling feet & hands, swelling and so forth also aren't that unusual. So... its just a matter of learning to adjust to the changes and keep working on me.
My hormones are raging and most days I feel like a horny kid. It is madness and a little disconcerting since I'm not seeing anyone at the moment. I feel that my judgement is compromised so I have become even less approachable than I have been throughout this ordeal.
Its a sad shame. I will figure out how to handle this soon enough... I know that what I'm doing currently (hiding out at home, not accepting calls, not returning calls, not going out) is not the best course of action. Just have to do better...all the way around. Starting with getting enough rest every day.
I am a contributing writer to a breast cancer awareness website, Fight Pink. Stacy found my blog one day and just reached out to me, asking me to contribute to her site and provide a voice for black women struggling with breast cancer. Its been a good collaboration so far. The Fight Pink website is really awesome, lots of different perspectives about breast cancer, lots of good information. Just really a welcoming site.
Today, I had a brief email conversation with a sista-friend who is watching her father and his wife deal with cancer. (yes, both of them at the same time) And she was telling me that they are at the stage of their treatment where their hair is falling out. They are struggling with this latest loss and just reading her message took me back to the time when my hair fell out. I was so devastated then. And interestingly enough, I've been really thinking about losing my hair then and dealing with my "new" post-chemo hair for a few weeks now. My hair is just so very different and dealing with it now is just amazing. Its nothing like the hair I had before. And it took me a few weeks before I realized just how much that difference in texture was making me reassess myself, my own beauty and what I felt about being a beautiful black woman.
As I try to navigate myself back to a place of "normal", issues about my beauty come up all the time. My weight is an issue, my mono-boob is an issue, my radiation "scar" (square patch of super-tanned skin), my nubbin, my hair... everything that is different about me now because of my breast cancer treatment causes me mini-moments of despair and distress as I wonder whether I'm still beautiful. Whether guys still find me attractive. And will it always bother me that my body will NEVER be the same again.
And then there's my hair. Its just weird now. Its so different now. Its...ugh. Its nice hair. I have to admit that much. Its really soft and shiny. But its not Nicole-hair. And then again, it is. Its just not the Nicole-hair I'm used to. Its different. Dr. S warned me that I would have new cute, curly hair after chemo but of course I didn't believe him. (gotta wonder why I didn't think he knew what he was talking about) I just figured that kinks would surprise us all and do what they do best -- be resilient to change.
I was wrong. My internal reaction to the difference in my hair texture has been crazy. Really crazy. When people ask me what I put in my hair...I have no idea how to respond. I understand what they are asking, and why...but when I say that its just hair oil and maybe some conditioner, they give me this look. Like..."why she don't wanna 'fess up that she got some chemicals in that hair?" (laughs) I just don't feel like having to explain every time that I have breast cancer and this curly cotton ball of hair that I have now is my prize for going through chemo and losing all my hair.
Anyway...I tried to explore my feelings about my new hair texture on the Fight Pink site.
I'm going to repost some of my Fight Pink article here... but I really want you to go to the Fight Pink website to read the whole article and let me know what you think.
I Am Not My Hair…
Washington DC–September 21, 2009–India Arie has a song “I am not my hair” and it’s all about her lifetime journey with her hair. Hair is a very sensitive and tenuous subject among black people, women especially. We have this “thing” about “good hair". In fact, Chris Rock is coming out with a movie called “Good Hair” about the very topic.
It is one of those things in our collective black experience that tends to drag us back to slavery issues, issues of acceptance in present times and self-esteem issues. Little girls with long, curly hair are often considered prettier than little girls with short, nappy hair. And that same mindset follows us doggedly into our adult lives as we learn to love and accept our hair - no matter the curl pattern we are blessed to have.
Entire blogs and on-line communities have sprung up around the issue of our black hair; how to care for it, how to love it, how to grow it, etc. There is an almost militant counter-culture making its way around the nation of men and women who are happily nappy and proud to showcase their affection for their very distinctive tightly-coiled, sometimes wiry, definitely defiant hair.
Before breast cancer, I wore my hair very short. There were many reasons. A part of it was because the very short haircut looked great on me; another part of it was that I like to sleep as long as possible and waking up early everyday to wrestle with my hair to prepare for work in corporate America was just not working for me; and another part was that even though some days I felt like a corporate sell-out, by wearing my hair very short and in a very distinctively black style, I retained just a small portion of my inner rebel against the mainstream culture that said I HAD to present myself in a certain way to be considered beautiful.
In other words, I took my frustration with my hair and turned it into a statement that dared anyone to look at me and not see beauty in my face.
I am not my hair.
Meanwhile, my very southern and very old-school parents had a hard time understanding why I loved my super-short boyish haircut. Long hair (for them) was very representative of beauty and without my hair, they worried that I would send the message to people that I was gay (which I am not), or that I was too strong to need a man in my life (which I certainly do not). I tried to reassure them for years that I never had a problem with anyone mistaking me for someone in the “life”. And men unfailingly found my short cut very sexy and ultra-sleek. It never was a problem, even with men who self-professed that they loved women with long hair. For me, they made the exception and embraced my standard of beauty for myself as one they too found beautiful.
For 12 years…I made the point with my haircut that I am not my hair.
When I was told that the chemotherapy would cause me to lose my hair, I did not think for a moment that it would bother me. I came into this world of breast cancer with an attitude that I was going to chop down this obstacle in my life and I wasn’t going to let it take me down. Nope. I was going to get through all of these treatments and surgeries and maintain the same life I was living up to that point. What was breast cancer to a determined sista? Nothing I couldn’t handle. Superwoman…that’s me.
Well, I’m sure my pink ribbon sisters are smirking right now because they know what I eventually learned. Yes, you can (and will) get through breast cancer treatments but you will also be changed - even if it’s just a little bit. But like I said in the beginning, I am not my hair. So, I had no idea that losing my hair would devastate me the way that it did.
Patrick Swayze died tonight. He was 57 years old. He was diagnosed with cancer in 2008 and now he's gone. Every death, every new diagnosis... feels more and more personal. I have chemo day after tomorrow and my heart is heavy.
What did WE do? The millions of us struggling with cancer, trying to get better... trying to outrun the devil that is chasing us. What did we do to deserve any of this? What did our family and friends do to deserve the hard task of watching us struggle? And most importantly... how can we fix it?
I sent out a "tweet" (a message on Twitter) just after I heard about Patrick Swayze's death that said... "I HATE CANCER. RIP Patrick Swayze. When will we find a cure for cancer?"
I received a reply from someone I don't know that said... "What if it was demonstrated that harboring hatred creates cancer? Would you still hate it?"
The answer is I don't know. I really don't. I know that you're supposed to love your enemies but I'm having a hard time loving something that is trying to take me out. Its MY life. I'm supposed to live it on MY terms. Instead, my whole world revolves around cancer.
This thing is hard. Its scary and its difficult. I am grateful that I have a fighting chance at life but even knowing that right now I'm doing alright, the fear of harsh and painful death remains close to my heart. For every moment that I laugh and giggle, there is a moment where I reflect and cry. For everyday that I go through life wondering at the beauty and miracles of life... I do have days where I wonder what it will be like if this cancer comes back after me.
I'm trying to outrun the devil. And he is on my ass something serious. Death isn't the scary part. Its the pain that would come before the ultimate end that freaks me out. When it gets to the point where there's nothing that anyone can do except pray and hope for a miracle. When the doctors and medical staff can only "make you comfortable" because your body is shutting down. When you're living just barely enough so that your friends and family can say goodbye and I love you.
I tell you its hard not to take this cancer-thing personally. I have a sense of urgency now. I would normally be going to sleep about this time, but instead I'm going to stay up for another hour or two and work on this book. If you see me, and I have bags under my eyes... its not the cancer... its the push to make my mark.
Gotta do it. Gotta make it. Gotta leave something behind.
I am tired of breast cancer. I know things could be worse. I admit that I have been remarkably blessed throughout this ordeal. But it is an ordeal. And I'm tired tonight.
Sick of aches and pains. Sick of wondering what I did wrong this time. Sick of trying to guess whether something is a major problem or a minor issue. Just tired. So really tired.
I've been thinking a lot about what I've learned along this journey. My line when asked, is that I've learned to be softer and kinder to myself and to be more relaxed. I have actually learned a lot of things. One thing I have learned is to be a bit more bold and a little less concerned with other people. I don't mean that I have learned to be a jerk (or maybe a bigger jerk). But I mean, I have learned that sometimes it is okay to think about what Nicole wants first.
I'm in a sour mood right now. I'm hoping it will pass soon but right now... I'm a little down. I had a wonderful weekend. I laughed until I cried so many times. So many times. I acted a pure fool and it was good. But the after effects of the flight home are really dragging me down.
My body is swollen and a little achy. My toe that was simply throbbing and tender last night... got much worse today. At one point, I looked down at my feet as I was walking through the office and realized that my toe was bleeding and it wasn't my imagination that it was hurting. I was stunned. A week ago, I was getting ready for a holiday weekend of fun. A week later, I'm at work wondering whether or not this issue was simple enough that a bandaid would be sufficient or if it rose to the level that I needed to alert the medical team about my latest little dilemma.
I called the oncologist's office and tried to speak to a nurse. That turned out to be a big deal. Having an infected toe is a cause for alarm -- but only a little alarm. It wasn't alarming enough for my oncology team to care. They suggested that my primary doctor would be a greater help. So... I decided that I didn't need to incur another bill... so I took myself to CVS and pick up some hydrogen peroxide, some neosporin and some bandages.
I felt better when I got back to the office with my supplies and worked on my toe problem. My limp was still there but I was still scooting around the office. No one really noticed and that's good. Right now, the pain is about a 2 or a 3, which is a good thing.
I have chemo next week and I'm already feeling a little anxious about it. I am coming to the end of my treatment. Its a blessing...but it scares me. So many things can go wrong and I don't know whether its a good thing or something to be worried about. However, I have to keep pressing on. I can't stay in the negative space.
I'm rambling... which means my ambien has kicked in and its timed for bed. I need a hug, a good hug. But I also realize that sometimes you have to make do with what you have. Or in my case, don't have.
I decided to go to Houston for the weekend and it was a good move. I had a wonderful time and definitely found Houston to be a really enjoyable city. I didn't do everything I had planned but I enjoyed everything that I did. It was great.
However, I'm having some swelling issues that I had not really anticipated and I'm not exactly sure how to handle it. My ankles and feet, and also my left arm are really swollen and puffy. I read that breast cancer patients should wear compression sleeves when going on long flights but (of course) I didn't do that and now I'm a bit concerned. Because of a mix-up, I didn't get to come right home after the flight and lay down as I planned. I did get to lay down within a few hours but I'm not sure if that was enough. I know that I need to elevate my feet and my arm to help facilitate the movement of fluid in my body.
I had a pedicure last week before I left on my trip and now my toe is starting to hurt -- thanks to the swelling. I don't know. Its all very weird and strange...and scary. If I can't get this under control by tomorrow, I guess I'll be spending a little time at the emergency room.
I have to figure it out because in the month of October, I am planning to travel out of town by plane three different weekends. I don't want to cancel because I'm having issues. I want to go to all three events.
I will keep you posted about how I handle the swollen toe/foot/ankle/arm.
.....
I have been trying to figure out how to deal with (and discuss) an issue that I've had for a few weeks/months now. Honestly, I think that all I can do is to put it out there and see if this too helps somebody out.
Right out front... I am SOOOOOOO sexually um, frustrated?! Not sure if that's the best descriptor but some of my elder relatives follow the blog and I don't want to embarrass them (or myself) anymore than necessary. Boyfriends (and husbands too I suspect but I don't have one, so I don't know for sure) are useful for more than just a drinks, dinner and movies. I don't have one of those anymore. And while I didn't have much (okay, any) sex drive during the early days of my treatment... it is certainly coming back strongly now. And I'm all alone.
That presents a challenge for me. There are a lot of factors at play right now -- I am really single; my desire for dating ebbs & flows; I am still wavering about sharing my body with someone in its current state; and on and on.
Let me start with...yes, I can and do help myself to myself. But that's not the same thing and it doesn't satisfy the deeper yearning I'm trying to balance. In my reading, I've learned that it is not uncommon to lose sexual interest during treatment. And it is expected that your libido returns once you're beyond the harshest chemo treatments and all that. So, in that regard, Nic is right on time for what she's experiencing.
However, I have to say that feeling this way with no outlet is really making things interesting. I'm going to keep it really real... I know that I am coming into a season where my sexual energy is going to be really high. I just turned 40 and I've been looking forward to this for many years. (laughs) But, the challenge of trying to figure out how, who, and whether or not to try to resurrect (or create) a sex life is overwhelming just a bit.
Lately, I find myself practically drooling at cute men every where I go. Its ridiculous. On the subway on my way to work, when I walk out of my building to go to lunch, walking through the mall... shoot, I found myself staring intently at this asian brother in the Detroit airport the other day. Part of it was that he was cute, and he had an afro...but another part of it was that I had a moment where I simply drooled over his attractiveness. And that happens so many times a day that I am starting to be concerned.
Truthfully, sex with anyone in the DC metro area sort of scares me because our HIV rate is really high. And I know that a lot of folks don't believe in getting tested and consistently practicing safe sex. But even if I go outside of my area, that part of the challenge still exists. So, I am trying to convince myself that maybe celibacy is the way to go.
Gag.
I know all of my friends who are practicing celibacy are sitting there saying..."come on over to the other side, its not that bad". But sheesh... I don't want to. (laughs) We will see what happens soon enough. My guess is that it will continue because I'm just not going to give it away... so I have to wait until someone shows up and then shows himself to be worthy of that type of connection.
Ugh. This is annoying, embarrassing, frustrating and so on.
The other "side effect" of my hormone treatment (tamoxifen) is that I am gaining weight. I think I'm gaining like 3 pounds a week or something. It is NOT cute. I mean, I am still adorable (laughs) but this chunkiness is messing with my swagger, my style. It is hard to feel sexy and attractive, with all this going on in my head. I don't know what to do but I will have to bring it up to Dr. S when I see him again. Because this is getting ridiculous.
My energy level is better, but still not great. I've been told (not by any doctors mind you) that I just need to get back to exercising. Maybe weight training. I'm going to look into it this week. I have to do something different and soon. Because I cannot get fat -- I can't afford new clothes.
According to the breast cancer site (www.breastcancer.org), weight training will help me. So, I'm going to look into that very soon.
Gotta run...feeling the ambien kicking in. Plus I'm tired and a little frustrated tonight. Not sure if I will be able to make all the trips I have planned in October. And I really really want to go...especially Las Vegas for the blogging conference.
PS. If you know any beautiful, single brothers who might make a good catch (single, single, single) please feel free to introduce us. I'm a bit of a challenge right now, but I'm adorable and somewhat smart. I can be a good girlfriend. :)
I am mentally all over the map these days. I realized this morning that I haven’t read anything breast cancer related (not including articles on the internet) in a little while. A few days, maybe even a few weeks. That’s pretty major for me.
My weight is picking up which is both good and bad. Good because my appetite has certainly improved. Bad, because my appetite has certainly improved. (smile) One of the nurses told me recently that the weight gain was due to the drugs I’m taking. The herceptin is significantly reducing my estrogen production in my body and along with that for some people, comes weight gain.
Oh joy!
Considering how little I ate during the early chemo days, I’m excited and happy that I am able to eat whatever I want, whenever I want now. But, I am starting to realize that I do not want to change my diet – even though I know that it would be good for me and better for my cancer. I have been dragging my feet about doing the detox my friend shared with me, and also about eliminating meat, sugar and refined flour from my diet. I do little things, here and there but I haven’t made that all sweeping change yet.
It is a little scary to think about changing everything I know not knowing whether it will truly guarantee me more years of living or not. I still have the “Nicole-math equation” rattling around in my head. You know… 30 to the 40th power divided by 5 = ??? How long do I really have left with this beautiful life?
The breakdown: 30, represents the percentage that my doctor told me that it’s likely my cancer will return. 40 represents my age. 5 represents the magical 5 cancer-free years that I’m hoping to reach once all of this treatment is done.
Since I am no math major (in fact, I was a lousy math student) I have no idea whether my equation makes any sense to anyone besides myself. But it is rattling around in my head, causing me to make crazy decisions and leaps of faith that I normally might not do. Like… deciding, un-deciding, and then finally deciding to go away this weekend. Or, asking a friend on a whim if I can visit him and ending the conversation with the cancellation of one trip and the unexpected addition of a separate trip. In the span of about 6 hours, I went from thinking about taking one trip this weekend, and one trip in October… to buying a ticket to Texas for day after tomorrow, cancelling my tentative trip to Atlanta and instead rolling out to Vegas for something entirely different. Plus a little get-away to Baltimore squeezed in the middle.
Normally, I would have found lots of reasons to talk myself out of all of these excursions. But, yesterday I had a brief conversation with someone about my decision to cancel the trip I’m taking this weekend…she reminded me that in order to have the life I keep saying I want to live, I have to actually live it.
Profound, right? (laughs)
Breast cancer has made me rigidly self-conscious and a little shy. Neither of which are natural states of personality for me. I am wearing my brain out over-thinking every detail of my life because I am so anxious that I may make the wrong step and bam! I’m back in somebody’s hospital wishing I had just been more careful.
Who am I fooling? I am not this scary girl. I’ve been her for a little while and it’s gotten comfortable here but really, I’m that girl that everybody always wants to laugh with, joke with and have a drink or a meal with. I am THAT girl with the bright eyes and winning smile who makes people comfortable because she’s just so comfortable. I am a little annoyed that breast cancer has made me the girl who looks over her shoulder; under the bed and then wishes she had a flashlight – before she even walks down the hallway to her own bathroom. All of the admonitions to take care of myself now – wear a compression sleeve if you travel, don’t allow any injuries to your arm to protect against lymphedema, sunscreen and bug repellant, no chemicals in your hair or on your skin, blah blah blah – are ruining my easy-going nature.
At any rate…I’m going away for the weekend to celebrate my cousin’s birthday and to see what Houston has to offer a single girl from Maryland in terms of fun and laughter. And next month, I’m going to Vegas to participate in a conference about blogging that should be eye-opening and inspiring and I’m taking a friend with me… just because he was open to the experience. I hope that come November, when I’m lying in bed recuperating from my surgery...I hope that these memories will sustain my joy and keep me focused on the living part of life.
