Apr 29, 2009
So, when I decided in 2007 that we HAD to make time, just 3 days for each other naturally I had no idea what 2008 would have in store for me. We were still discussing where to go and when to go when I found out that I had cancer. And those plans fell by the wayside as my focus (our focus) shifted to more pressing matters like chemotherapy, and mastectomy surgery and so on.
I have called each of these sisters at different points of this journey to cry, to laugh, to connect... to feel whole again. And each of them without fail, stepped right up and embraced me over the phone or through an email and made sure that I knew just how deeply I was loved. They are the kind of friends that "I" need. They never doubt that I love them. Even during the darkest days, when I couldn't or wouldn't return phone calls -- because my heart was breaking, or I just didn't feel up to -- they kept calling. They kept reaching inside my tiny circle to hold my hand (virtually). They made me laugh and smile -- without even knowing that I may have been crying for hours -- which happened a lot then.
I'm telling you about my loves because like I said... I don't see them often and don't talk to them all the time. So, in the meantime, I've found facebook and twitter. And it has been AMAZING. Nothing could replace these women in my life but today it dawned on me that just connecting with people over facebook and twitter has helped my spirit immensely.
I know that a lot of people in the world are not familiar with twitter and facebook, although just about EVERYBODY in my world is. Celebrities are flocking to twitter because it offers them a direct line to connect with their fans, removing the filter of the paparazzi, the media, and staff. They get to be real people with real people. It has been fantastic. For the past two days, I've been chit-chatting (and eavesdropping on conversations) with people I may never meet in my life. Fantasia, DJ Dnice, Ray J, Toccarra, Plug One (from De La Soul), Shaq, The Fat Boys, DJ Jazzy Jeff, Idris Elba, Solange, Ice Tea, Spindarella, Gabrielle Union, Estelle, Tyrese, Kelly Rowland... you get the drift. There are more but I can't remember them all. What's funny is that I'm not really that big on celebrity watching, etc. I rarely read celebrity blogs or magazines and I seldom watch celebrity-focused television shows. But chatting (or eavesdropping) on celebrities on twitter has changed my perspective on things.
Why? Because I realized that they are just human beings like me. They have good days and bad, they have likes and dislikes... it just happens that their lives are exposed to many more people because of their professions. I knew that but it hit home for me today when I was twittering with all the folks I follow and who follow me and I realized I was reading and responding to people based upon what they shared about themselves and not who they were. Most of the people I follow and who follow me are strangers. But they are some of the most loving and helpful people I've met online in many years.
Have a problem? Send out a tweet. That tweet gets re-tweeted seconds later. And within a few moments hundreds or maybe thousands of people have been made aware of your question and someone usually responds immediately. It has been incredible to see bread cast upon the twitter waters and bring back whole loaves within moments. Twitter allows you to follow what is happening with other folks so you can see a question/comment go out and the responses flow back in real time. I love it.
Facebook is similar yet different and just as amazing for me. With facebook, I'm connected to people I know or have met along the way. And people I don't want to talk to, I don't have to. Facebook shares more of who you are -- pictures, links, connections to other friends and family members -- so there is more incentive to be protective of your privacy. I've enjoyed facebook immensely because it has allowed me to have brief spurts of spontaneous conversation with people I know or to NOT have those conversations if I don't feel like it.
I'm not much of a phone talker. When I do talk on the phone, I may be on there for hours but I can honestly go for weeks without talking on the phone to anyone. And not feel badly about it. (laughs) I prefer email. Strange but true.
My birthday is in a couple of days and I am celebrating a milestone. My girlfriends have been on my mind because since we didn't have our girlfriend weekend last year, we are meeting in Miami to celebrate my birthday and how far I've come on this cancer journey. I leave next Thursday and will return on Sunday. I cannot wait. Thinking about the upcoming trip, my birthday celebration and just life in general... made me realize that connecting with other people is very important to my spirit and my healing.
There are a lot of people and businesses on both Twitter and Facebook for business/marketing related reasons. And to me, that's fine. It goes with the territory of being in a capitalist society. (which I don't mind at all) But the amazing sense of comraderie and openness to simple communicating is fascinating and heartwarming to me.
When I return to work on Friday I won't be able to play with my friends during the day. I hope that the fact that I will be back among the "living" will offset any loss I feel from that disconnect with my virtual playmates.
All of this to say...
Today I realized that it is important (to my health, my sanity and my emotional balance) for me to connect with others and to share/receive from other people. I may be a loner at times but I require the "touch" of others to make everything seem balanced. Right now, I am focused on HEALING in all ways. Protecting my body and my spirit from toxic things and people. Twitter and facebook -- despite what you may hear or think -- have been helpful tools on this journey of healing discovery.
Thank you for sharing yourselves with me. You are helping me to become whole and healthy again.
Apr 26, 2009
My oncologist (the ever so wonderful Dr. Siegel) was one of the speakers for the evening and it was great seeing him at the podium. I didn't get the opportunity to speak to him -- I didn't feel up to navigating all the tables to find him -- but it was reassuring that he was there. Other than my mother, the only person I recognized in the room was Mayor-for-life Marion Barry. And he was sitting several tables from us as well. Not that I know him to strike up a conversation with him.
Let me go back to the beginning of the evening.
My hot flashes must be triggered by stress because I could barely put my makeup on and get dressed in a timely fashion because I was sweating like an overexerted athlete. There is a special frustration when you take 15 minutes to carefully put on your makeup, only to watch it disintegrate into nothingness because of relentless hot flashes. I had to leave the bathroom several times to go into my bedroom and stand (in my underwear) in front of my fan trying to cool off.
It was not amusing.
My dress, while nice was just a shade more "ordinary"... um conservative?... okay boring... than I would have worn prior to cancer. It was a perfectly fine "little black dress" but it wasn't sexy (not to me) and it wasn't fabulous and I didn't feel sexy or fabulous in it. The extra large rectangle of burned/discolored skin presents real challenges for me to dress around. Adding to the dilemma is the issue that one breast does not make cleavage. And many many outfits are designed to show off very feminine and alluring cleavage.
The dress was a sleeveless black dress with a sheer-ish fabric covering my chest area. The top had just a sprinkle of crystals to give it some shine and a drape in the back to provide just a hint of sexy. It stopped just at my knee, and it had a little "flow" to it at the bottom. It wasn't a bad dress at all... in fact, it would be the perfect "work dinner" dress because it covered everything. It just wasn't the kind of dress you wore with an extra bounce in your step because you KNOW you look amazing.
I didn't look amazing. I didn't feel amazing. And the reason why I cried in the dressing room on Friday was because there were dresses that I really thought were gorgeous but I knew I would be too uncomfortable to wear in my current state.
Tonight was one of the first times in my life that I noticed other women's cleavage and/or dress designs to the degree that I did. Normally, I notice just the dress and sometimes the woman in the dress. Tonight, every woman I saw, I found myself looking at more closely trying to "see" if she also was a breast cancer survivor. I looked for scars, lopsidedness, radiation scars. I couldn't tell. (laughs) And I suppose that it was for the best.
I never longed for cleavage before my mastectomy. With larger breasts, I never had to. I did have to learn to embrace those curves and appreciate the beauty in their very obvious femininity. And I did learn to love my breasts, and my cleavage. I am having a more difficult time than I imagined learning to love my new body. I imagine that after my reconstruction, I will have another learning curve to accepting the new breasts as well.
But tonight, my emotions were in overdrive. I felt like an imposter - pretending to be comfortable in my skin and confident about who I am. When I felt nothing like that at all.
All of this is pretty shallow but not truly so because it affected the way I felt tonight. I didn't feel "pretty". I looked fine but not "Nic-fine"... if that makes any sense at all. When I walked out of the house tonight I simply wasn't feeling fully myself. I felt like a pretender and that feeling dogged my mood all night.
So, I'm sitting with my mom and we only know each other. The other people at our table seemed to be just as uncomfortable as we were and they weren't very chatty or personable either (at first - they warmed up by the end of dinner). We are sitting in a vast ballroom of strangers, unable to mix and mingle because we arrived just at the beginning of dinner. That didn't help. The program was long and rather tedious, I felt "un-sexy" and a bit uncomfortable... and the food wasn't great.
I will say this though, my appreciation for the cancer center increased exponentially tonight. These folks do great work for a lot of people and their hearts are truly into their work. Its a beautiful thing. I am grateful that I had the chance to go to the gala tonight. Normally, a formal event gives me reason to reflect on my life and how lucky I am. But tonight's reflection brought tears to my eyes and a stab of fear into my heart. One of the evening's award recipients was a phenomenal sister who is going through her second bout of cancer. She had breast cancer in 2002 and it returned last year with a vengence. Her smile during her acceptance speech was absolutely electric. By the time she got up to speak, I learned that I was sitting at the table with several friends of hers and her neice and nephew. I was the only cancer patient at my table.
Her family and friends adored her. She received several standing ovations and based on what was shared about her life, I could see why. She was a very accomplished woman and by all accounts, a very warm and generous spirit. She was truly inspirational. And yet, looking at her small frame, and her shiny bald head made me sad in ways that I can't express. Her current reality is my nightmare. For all of her accomplishments, she could not stop cancer from returning to ravage her body. She spoke about how blessed she was to even have cancer, how much she gained because of cancer -- the people she had met, the awards she received and the outpouring of love from the people in her life. I understood her words but I honestly thought to myself that I would give all of it back (in my own life) if it would keep cancer from returning to my body.
By the end of her speech, close to the end of the evening... I was beyond ready to go. I no longer felt like the event was fun and a light-hearted way to spend a Saturday evening. I felt exposed and vulnerable. I felt afraid and angry. I wanted to go home. Now that I'm home and revisiting how I felt throughout the evening, I'm realizing I had less of a good time than I realized at the time.
I have so much work to do to get back to a level place emotionally. I didn't have a horrible time tonight, not at all. But as I review the evening and try to be honest with myself... my dissatisfaction had a lot to do with how I felt about myself, moreso than how the event itself went.
My next "event" is on Saturday; my birthday brunch. I realize now that I have to do whatever it takes to be sure that I FEEL fabulous, so that I can fully be in the moment and not in my head. It should be better because I will be surrounded by people I love and who love me. Instead of sitting in a vast room of strangers, feeling too timid to speak up, and too bored to have a great time.
My 40th birthday is Friday, May 1st. If you get a chance, send me an email saying "happy birthday". Right now, I'm not planning to go out on Friday. I may go to work, but that's about it. And even that is up in the air. (smile)
Apr 25, 2009
I fell asleep around 5:30 am and awoke to my cellphone alerting me to new emails at 9:00 am. Usually I ignore the phone and just go back to sleep, but this morning something told me that I needed to see what was going on. And I'm really glad that I did.
I had received an email from an e-friend (smile) who shared some bad news about cancer touching her life. Her pain was so raw and although I've never met this sista in person, I wanted to go to her side and just hug her.
Since my diagnosis, I can't get away from cancer. For a long time, I thought that "getting away" was the goal. I wanted to move to a life where I didn't think about cancer anymore. But I'm coming to accept that it won't be possible to get away and even if it were possible, I'm not sure that I should.
Cancer is one of those illnesses that is always portrayed as a big scary monster. Television characters and movies use the word "cancer" as the ultimate threat. The fear of dying from cancer, the fear of living through cancer treatments... and so forth, just hangs out in the air like a blanket. Smothering us at its own will.
Even when you're not living in fear of the disease striking you personally, if it strikes someone close to you or someone that you recognize (like a neighbor or a celebrity)... it just hits a negative chord. Either we have become spoiled because of our track record with irradicating diseases or our ignorance about the disease is driving us mad. Maybe its both.
I'm supposed to be getting dressed right now to go to the cancer gala this evening. But I can't stop thinking about my friend's new family situation and the path ahead for them. I just read another breast cancer survivor's blog about healing after breast cancer. Her perspective was that healing is a process and you really don't start "healing" in a whole body-mind sort of way until after you've gotten through your treatment. I really agree with her.
I want to be able to tell everyone that now that my mastectomy is over, the harshest chemotherapy is past and my radiation treatment has finished... that NOW I'm healed and ready for the world. But the truth is that I cannot foresee the day when I don't have a thought or a tear about cancer. I may look okay and feel better but I know that this battle hasn't been won and it isn't over.
My doctor (the fabulous Dr. Robert Siegel) has been very careful not to say that I'm cured of breast cancer. Even though he is very optimistic about my future and has been very excited about the way that I've handled all of the treatment so far I am longing for the day when I hear that I'm in remission. But I'm wondering whether that word will just then become another label that I'm forced to wear without realizing the full weight of it until its too late.
My advice to my friend was that she allow herself room to grieve and be sad about this news. I am a true believer that we self-impose stress on ourselves trying to be brave and strong all the time. We are strong, but sometimes the best way to show our strength and to use our strength is to be vulnerable. Don't wallow in your weakness but accept those soft spots that we all have as part of the entire package of you.
Getting the diagnosis that you have (or someone you love has) cancer feels like the worst day of your life. And if my story is indication of other stories... you will remember nuances of that day for a very long time. But, I have to tell you, diagnosis is only the beginning. The road is hard and it is long -- if you're fortunate, very long. But you learn about yourself, your ability to love, your ability to be resilient, to be giving, to be... human. Willingly walking into the fire of cancer treatment is no easy decision and there will be many moments of doubt and fear. But you CAN get through this.
I tell myself everyday... usually after I've shed a few tears about something... that this is not THE END.
And to my friend, I am sending up prayers, sending healing thoughts and peace... but mostly I am waiting with open arms and ears for those moments when she will just need to talk/vent/cry/shout/whatever.
I will be here for you on those days. I am here for you now sis. We will all walk through this time together.
Apr 23, 2009
I made myself go alone. Not because my mother wouldn't take me but because I'm trying to force myself/stretch myself into some independence. As soon as I left the house I wanted to call my mother to come and get me. But I knew that I HAD to get this test, I couldn't delay it again so I took some deep breaths and just trudged through it. And I made it but it was really hard.
Those of you who know me... know that I do not have a poker face. Everything I'm thinking and feeling shows up on my grill. The poor technician who did my echo was quite worried about me. I was an emotional wreck. I talked to my doctor before I left the building and he told me that it was probably the ambien that was making me feel so horrible and that if it didn't get better in a day he would switch me to something else.
Um. Yeah. Nicole will not be taking anymore of those pills. I don't know what I'm going to do about sleep -- tylenol pm just isn't working but neither is this ambien. Oh well. We'll figure something out.
Today's excitement is that ... my new silicone prosthesis arrived today. WOW! It feels like jello in my hand, haha! I ordered the largest size they had because my foam prosthesis is significantly smaller than my breast and it looks really crazy to me. I am not balanced. But, this sucker is HUGE. (laughs) Huge being relative because I don't think its still quite the size of my natural breast but it is much closer and the weight is more accurate. The foam prosthesis feels sort of like a shoulder pad so when I have it on, I don't feel it really. But according to the information that is out there -- not wearing a prosthesis that is close to the size of your natural breast (or not wearing one at all) can cause problems with your posture and your shoulders.
I can tell by looking at myself, and checking myself at various points in the day, that its true. I favor my left side a bit more now. I hold my arm constantly at an angle across my body -- sort of an unconscious attempt to protect myself I think. They call it a "napolean reflex". (laughs) So if you see me and I'm holding my arm -- just kindly (and gently) push my hand down to my side. I try to remember to do that during the day when I realize that I'm holding it up. Its bizarre really. But, not uncommon it seems.
I can't wait until I have my reconstruction surgery and am really feeling whole again. I haven't been fitted for a prosthesis yet -- simply because I haven't made the time to find a store that specializes in these products and made an appointment. I honestly don't want to. But I will because I know I need to. In the meantime, I needed to get something to wear (at the minimum) that was waterproof and swimmable. Because I will spend some time in the ocean.
I just re-read (quickly) what I wrote here and it sounds like I'm chastising myself about wearing my prosthesis. I don't mean to be so hard on myself. Or appear that way. If I weren't going to the beach, wearing the foam prosthesis (shoulder pad, lol) would be acceptable for a while longer because I'm only a short time out of radiation. I don't imagine that I'll wear this silicone one too often at first -- because it really does feel heavy. But I will work up to wearing it comfortably.
I tell you. I don't know how some women get breast implants and double or triple their natural size - or go even larger than that. Its CRAZY! Breasts are heavy. Sheesh. Any way... what other goodies did I get? Oh! I also got a medic-alert bracelet. (laughs) Who woulda thunk that I would ever need one of those? Because I had a radical mastectomy and had some lymph nodes removed, I am at an increased risk of getting lymphodema. Because of that risk, I can no longer have my blood pressure taken on my left arm, or have injections on my left arm. It dawned on me that I might want to wear something that (just in case) would alert medical personnel that I do have a medical issue that they have to be aware of. Its not the "prettiest" bracelet I've ever seen but hopefully it will never ever have to be used.
At any rate... I talked to my HR disability person and she said that I am tentatively scheduled to come back to work on May 1 -- my birthday. But... even though they are expecting me at that time, I still can't actually walk on the premises until I have my doctor RELEASE me to return to work. Ugh. More paperwork. (shrug) But I can definitely tell that I'm ready to go back because I was talking that poor lady to death this afternoon. (laughs) I did apologize for my exuberance though.
My swimsuits are on their way and I also received today the "pockets" that I need to sew into them to hold the prosthesis. I have to chuckle at all of this preparation because its just not my style to work this hard. I'm learning to go with the flow more and more... and I'm working on not comparing myself today to myself 6 months ago. All in all, today was a good day -- even though I didn't go shopping for a dress today. But the plan is to head out tomorrow and hopefully find something at the first place I stop. Haha! Like that's even reasonable.
Today was good because I ate food and didn't vomit. My headache has practically gone away and I've crossed more things off my to-do list. I've had a few moments of sadness, thinking about dating and the future but after a few tears and a little bit of worrying... I pushed on. Whether or not I meet the right guy doesn't matter as much as learning to love this new stage of my life. As much as I'm worried about what dating might be like in the future, I know that its only going to be as good as I am. I'm finding my way back to peace through meditation and prayer and reading scriptures at night. Right now I'm planning to forestall dating until 2010 but we will see what happens. (and yes, I do have a reason for that...)
Apr 22, 2009
So... I still haven't solved the swimsuit dilemma and now I have two additional shopping emergencies to work out. (sigh) First, is deciding what to wear to the brunch. You would not believe the mental hoops I've been putting myself through trying to decide whether to wear a dress, a skirt, jeans or a suit. For weeks, I was determined to find the prettiest and most feminine dress. I wanted to feel like a lady. But then one day, I actually stopped and looked (well, stared actually) at the radiation scar/burn... and it dawned on me that I wasn't really up to showing that to anyone. Its not horrible, in fact its much better than it was just a week ago... but its not pretty either. I'm rather self-conscious about how I look these days so, I didn't want to wear anything that might disturb my peace of mind on that day.
So my next thought was to wear some nice trousers with a crisp white shirt. But then, I got all discombobulated thinking about choices. Throw in the dilemma about what shoes and what purse to carry... and then I just shut down for a few days. Shopping before my cancer treatment wasn't always fun but if I had the money to spend, then I could always find something to look nice in. Now... jeez. I have to consider so many things that I didn't think of before. My body is different now, and its not just because I only have one breast but its also because my skin is burned and black, my breast forms are not the same size as my natural breast so I worry about looking lopsided. And I worry about my burns peeking out for the world to see.
Its just overly dramatic in my mind. And I'm tired of over-thinking everything. So... I moved from thinking about trousers and a shirt to wearing a suit and a feminine blouse. And I think that's where I'm going to stay. (laughs) For now. So... let's throw another twist into my shopping dilemma....
I'M GOING TO A BALL this weekend.
ha! Can you believe that? I received a call from the hospital inviting me and a guest to go to the cancer gala this Saturday night. I accepted because the folks at my cancer center have become super important to me. Super-duper important. I can't state it enough actually. I love those folks like I love my family/friends. This event is a fundraiser for the cancer center and the tickets are $500 per person. (ouch!) But luckily, I am able to attend as a guest of the cancer center and bring a guest. I asked my mother to go with me. I asked her to go at first because I was so excited and I thought that she would enjoy a "glam" night out. Plus, she's been so good at being by my side every step of the way -- especially since my boyfriend became to busy and then eventually became my ex-boyfriend. She didn't miss a beat in helping me out everyday, making sure I made it to every appointment, filled my prescriptions, had adequate rest and good nutritional habits. She has been my #1 supporter.
But... the downside -- which didn't hit me until a day or so later -- was that I don't have a doggone thing to wear. The event is this Saturday and I don't have a dress or even shoes for the grand event. I suppose that I will figure something out. But its just another twist on the shopping drama.
Let's add it up, shall we? I still need at least 1 swim suit and a cover up, related sun accessories; I need a fancy dress w/shoes and finally... a birthday outfit as well. For a sister on a limited budget and low energy... this is a tall order. But I'm up for the challenge, or I'm going to miss out on some fun activities. And I don't want to miss out on another thing in this life. Not another thing.
I had a great weekend. Had dinner with some girlfriends, celebrating another birthday and then we followed up with drinks and giggles at a martini lounge. It was fun. I enjoyed lots of champagne (early toasts to myself for just making it through the past few months) and even danced a little bit. I wasn't totally the "old" Nic but I certainly was very much the "new" Nicole. And I enjoyed myself immensely. I think I stayed out too long and drank too much wine but it was a really good time. I spent Saturday in bed... my joints were aching something terribly and I was just tired. But I sort of expected that. I walked a lot on Friday -- got turned around before I made it to the restaurant -- and then I was dancing and drinking like I didn't have a care. I figured it would come down on me later and it did. Sunday, my parents and I went to National Harbor and had dinner together. It was another really good time.
My parents are really wonderful people and they make me laugh all the time. All the time. I always threaten them that I'm going to put some hidden cameras in the house and tape a reality show about them. (laughs) But they are wonderful parents and good people. I feel so blessed to have them in my life. I relish the time we spend together, especially the happy laughing times. Life for all of us has been so stressful and scary over the past year. And I feel a lot of guilt about having cancer, having to rely on them so much, even for not being married yet and not having kids. Yep. I know its irrational, but its what I feel.
I went to chemotherapy today - a day early - for my herceptin treatment. I was not scheduled to see my oncologist today, but I got lucky (laughs) and had a chance to see him for a few moments. Dr. Siegel is just wonderful. He and the nurses at the cancer center have been my sunshine through all of this craziness. I know that they have stressful and demanding jobs. And it would not be unreasonable if they were curt or rude on occasion but they haven't been. Dr. Siegel always has a smile and a joke for me; or some flattery. (laughs) He's very human. And the nurses are too. They have made some mistakes (the nurses) but nothing that wasn't fixable. The reason I went to chemotherapy a day early was because one of the nurses made an error. She ordered herceptin from the pharmacy but it was a mistake. The herceptin has to be used within 24 hours of preparation or it is trashed. So, the nurse called me and asked me sweetly if I would come in a day early for my treatment. No muss, no fuss.
When I'm in the cancer center, I watch the other patients -- I just love watching people no matter where I am -- and some of the patients are just cruel and harsh to the staff. And it makes for an uncomfortable setting for everyone involved. I try my best to remain calm and not get stressed out while I'm getting treatment. Making other people feel bad just because I may feel bad will not resolve a bad situation. So, I think that the nurses treat me a little special because I am not a "problem" patient. And it has made for a good ray of sunshine during an otherwise gloomy time.
There is a gentleman in the cancer center -- I don't know his name -- but he just started his chemo about 2 months ago. I'm not sure what type of cancer he has, but he's in an advanced stage of cancer. He is a trip. (in a good way) Very lively personality but seeing him today made my heart twinge. He's really frail and thin, much thinner than he was when I saw him last. He walks very gingerly, as though his feet are just in pain. And he is completely bald now. I noticed dark spots on his head and on one arm... and I remembered that I had those same spots when I was bald as well. At the time, I thought that it was just the way that my scalp looked without hair but I realized today that it must be from the chemotherapy.
He was happy today and cheerful as usual but I felt so sad watching him. I know that he is probably giving his all everyday to kick cancer butt, and judging by his cheerful demeanor he probably recognizes that this is just one step on his journey. But I wanted to cry when I saw him. I'm not done with my treatment, not by a long shot. But I don't have the "look" anymore. My pain is manageable and I can return to my life for the most part. I pray that my friend will soon return to his life as well.
Whenever I see a cancer patient, I feel overwhelmed with sadness. Cancer is hard and its mean. And the treatment of it is hard and mean as well. You lose some of your essence going through the process of treatment and you may lose people that mean a lot to you. You can't get back the days you lose because you're sleeping, or in the hospital, or in too much pain to move. You can't get back the time you spend in waiting rooms, or hooked up to IV's. You can't get back the hours you may spend in the emergency room, or at the cancer center receiving infusions... or what feels like millions of tests and vials of blood that is taken from you.
You can't get any of that back. And the worry about how the treatment is affecting your body, and whether the cancer will come back... you have to learn how to live with that constant nagging in your head but not allow it to consume your heart and mind. Its a constant juggle. So when I see cancer patients, I get teary sometimes and I get sad everytime. Because I know that there is another soul who has been set on a rough path and I wish that they didn't have to suffer that way. I wish that I didn't have to either.
I am still in the process of learning how to balance having cancer (or as my friend would say... HAD cancer) with moving forward with life. In one moment, I can be happy and carefree and excited about something silly like my birthday... and then 10 minutes later I may have tears running down my face because I look back in my mind and realize that I have been through hell and its not quite over yet.
My mental state is a circus actually. I am trying to prepare to return to work. I am trying to figure out what clothes to wear and all that. I'm also thinking about my trip to Miami for my birthday celebration and considering my plans for the future. Going back to school, buying a new vehicle and preparing myself to buy a home of my own. Just trying to put everything on the right schedule. It can be done, it just needs to be planned out.
I've got to go, my ambien is kicking right in. And it is difficult to focus on ending this well.
Have a good day everyone. I have to go back to the hospital for an echo-cardiogram. They have to make sure that my heart hasn't been damaged.
i'll finish this tomorrow.
Apr 15, 2009
I'm getting myself prepared for my first vacation in a couple of years... and its been a doggone hassle. My skin is healing from the radiation treatments. Its still peeling and flaking off but its not as gross as it was previously. I have to go back to the radiation center on Friday so that they can look at my progress and possibly prescribe more medication to help with the healing.
In the meantime, I'm preparing myself to protect my very fragile skin from the harsh Florida sun. I'm researching sunscreens that will be mild enough for my skin, yet have high spf to protect me from the sun. The only time in my life that I've ever been sunburned -- and lawd it was BAD -- was a few years ago on a Florida birthday vacation weekend. I got burned because I was in the ocean for hours. Yes, I said hours. Then I followed up with sitting on the roof of a bar for HOURS... and needless to say, my poor skin paid the price.
I can't afford to get burned and because of the chemotherapy treatment and the medicines I take, my skin is very susceptible to too much sun. I've found a few options, but I won't know whether they are good until I get to Florida. :)
As a woman, buying swimsuits is already a hassle. Being a woman with larger than average breasts makes a hassle even more of a challenge. But DAMN... being a woman with just ONE extra-large breast... just took all the drama to a new level.
So, I have spent the past few weeks searching for suits online that may work. The coordination of necklines, sizes and designs -- has to be designed in a certain way so that I can wear my prosthesis -- has become a serious headache. I have laughed at myself more times than I can count over the past few weeks. There's another dilemma to my story...
...mastectomy prostheses don't come as large as my natural breast.
So, I'm trying to find ways to limit my lopsidedness -- without it being too obvious that I've had one breast removed. I haven't bought a bathing suit in years and now I remember why. Its a real pain in the butt. I'm big on top and not so big on the bottom. My natural breast rarely fits in the suit -- they just aren't designed for all this tissue -- and the few designs that are out there for either mastectomy patients or larger women are U-G-L-Y!!
Its absolutely crazy. I have 3 suits on my bed right now that I will be sending back because they just don't fit. Right now, I'm laughing, but honestly... I've cried more than a few times throughout this ordeal.
Did I mention how much "fake" boobies cost? Good lawd. These things are expensive. Who knew? Not only is having cancer expensive from a medical point of view -- its expensive from a general living perspective as well. Just getting prepared to go to Florida is costing a lot of money. I'm only going to be there 4 days... The cost to stay there, is cheaper than what I'm spending to be prepared when I get there.
But... (cheesy smile) I'm going to FLORIDA!! And I'm excited. :)
For a moment (a long long moment) I considered not swimming at all. But that's just not me. I love the water and if I lived near the ocean I would probably swim everyday. It made me very sad to think of being so close to the water and not being able to get in because I couldn't find the proper attire. Eventually, I decided that I deserved to have all the fun I could stand on this trip -- so I'm still looking for a great suit. I will post a picture of me at the beach so that you can see what I finally end up with. Three weeks out -- its not looking promising. And you know, that if you're not wearing clothes that you feel look great on you, you may not feel that you look great at all. And your attitude can quickly go downhill from there. I need to have all the fun and giggles I can stand... so to me, its imperative that I look FAB-U-LOUS so that I feel fabulous and I can radiate happiness and joy all around.
It is a journey. :)
What else is new? Oh, I will be going back to work very soon. I haven't decided on a date but probably in a few days. Its going to be a challenging transition. But its time. I will still have to work around all my medical appointments and my remaining chemotherapy treatments. And I still have to schedule my reconstruction surgery for the fall. And I don't know yet whether or not I will have the other breast removed as well. But I will be heading back to work within the next week.
Thinking about the possibility of the cancer returning scares me. But when I research the numbers about removing the non-cancerous breast to avoid recurrence -- it doesn't make a lot of difference. So, I just don't know yet what to do.
Right now, I would say that my biggest issue is my mind. How I think of myself has definitely changed. I broke down into a puddle of tears over the weekend at the idea of going out for drinks with a friend. I could not finish getting dressed because I became so upset at the idea of a guy talking to me. How crazy is that? Going out with my friends when I know that it will just be us girls, doesn't freak me out. But the thought of meeting guys, or even just talking to them unnerves me.
That's not who Nicole is. I can talk to anybody, any where. At least I used to be able to do that. Now, I don't know. I've lost something, some part of me is missing.
I have been thinking a lot lately about how public this blog is... and how I'm managing the attention that it receives. Most of the time when I'm writing an entry -- I don't really think about you (the audience). I know you're there but I don't pay attention to that. I write what I'm feeling. But... after the fact, when someone responds to me in a certain way, I become ashamed and a little embarrassed. Even with that... I still want people to read it and I still share it far and wide because I know that this story isn't the only story out there.
I will be talking (in public) about my journey with breast cancer next month. And I've been amazed at how much this frightens me. Talking in front of groups does make me nervous, but usually only slightly so. I speak off-the-cuff, rarely do I write a speech or jot down notes to help me. I say what's in my heart in that moment. But with this, because of the serious nature of the disease, because I don't want to give out false information, because I know that breast cancer touches a lot of lives -- I'm starting to freak out a little bit. I don't want to do a disservice to anyone who has the disease, or who has had a loved one deal with it. And I know that I'm alternately upbeat and distraught about it. I don't want to scare people in the audience with my tears and my frustrations... but I do want them to know that you can get through this.
I have about a month before the event, so hopefully after spending some time in Florida my mood will be better and I will be able to connect with the audience in a way that leaves them with good thoughts on their mind.
Returning to work is scary to me. I still am uncomfortable travelling alone. I still haven't worked up the courage to get on the subway again. I still am freaked out by the notion that I may pass out, faint, fall down, trip... or otherwise end up in need of medical attention. So, going back to work is challenging me in many many ways.
Today is one of those days where I am just thinking a lot, about a lot of things. I'm feeling a little lonely but not enough to get outside and go somewhere to be around people. Last night on facebook, I was chatting w/an old friend. And he made a comment about me being sexy or something like that. My face was crushed. There was a time when I felt sexy and desirable but that is not the case anymore. I know in my head that when people look at me, they can't see anything wrong or different about me. But my heart and my spirit are in a different place. I still blurt out "I have cancer" when I do talk to people I don't know, or who don't know. And I feel that it is highly inappropriate to do that but I can't help myself.
I'm in a relatively constant state of self-pity. It is SO VERY annoying. But its there and I can't shake it. I told my friend that I was different now, I felt different now about myself. That I felt that cancer had taken a lot from me. And he replied that he hoped that cancer had not stripped away my confidence and my joyful nature because that was the most attractive thing about me.
I didn't want to tell him that I thought that it had. I'm pushing myself (slowly though) to a place where I reach outside of myself and my feelings to connect with others. I gave myself a challenge to go out alone one day this week. Today was supposed to be the day. I'm still shut up in my room. I tried to go out on Friday to a birthday party of a friend of mine, and I could not get it together. I started thinking about seeing all of my friends there and was overwhelmed with the notion. I talked myself out of going but I really wanted to. These feelings are foreign to me. Well, not totally. In the height of my depression, I rarely left the house. I would actually have panic attacks when it was time to go to work. One day, I had to call in and tell them I was sick because I couldn't walk beyond my own bathroom to get to the living room and walk out of the door. That was a really really bad day.
I'm not "that" bad right now... and I don't want to get to a point where I'm once again feeling so afraid of engaging with other people that I don't leave my home. So, I know that its important that I force myself to interact with people and get outside. Just to remind myself that my story isn't the only story in the world. I think that I will make my solo adventure day tomorrow -- maybe I will go to the mall and look around.
I still need some shoes for my trip and a birthday outfit to wear to my brunch. (eyes rolling around) I don't like shopping too much and I'm not looking forward to spending money. But, I HAVE TO get out of this house and do something that makes me feel like I am able to take care of myself, by myself.
Apr 8, 2009
I am supposed to have my heart tested every 3 months now to make sure that the medication and treatment isn't having an adverse affect on it. I'm a few months overdue. My oncologist didn't seem too perturbed about that but I definitely need to get it done before I see him again in 6 weeks.
Scheduling appointments seems to be my new job. I think that I will go to see a physical therapist and try to work on regaining the full range of motion in my left arm. I don't know if my thinking is correct but I feel that I should work on that arm before going into my reconstruction surgery. I am not, however, looking forward to trying to squeeze one more thing into my schedule.
I hope to return to work very soon. Its been a nice vacation (laughs) but I think its time to go back to the real world. I am so much more tentative about things that I readily did previously. Like riding the metro (the subway) and going places alone. I have become afraid of being out by myself. I worry that I may faint or otherwise lose my strength and be stranded away from home and safety. I don't go out very much now. And when I do, I rarely travel alone. I need to move past this fear. Its really important.
I am working on the new blog -- it is slow and tedious work. I'm not sure when it will be ready for the great reveal. But I think it may be several weeks from now. There are two blogger conferences that I would like to attend this year and if I can't get it together with the fear of travelling alone, its going to be a difficult journey for me.
(say a prayer)
I was a little rebellious today... I did not bandage my skin wounds all day. I wanted the area to breathe and get some air for a change. As a result, when I went to put my antibiotic creme on tonight the raw skin had started to crust over. I'm sure there is a good medical term but I don't know what it is. It wasn't a scab, but I'm hoping that it means that the healing is taking place. If I don't have new skin by the time I get to Miami... its going to be a difficult weekend for me. :)
I thought a lot about Robin and death today. And I've been considering that I need to execute a will -- not that I really have much of anything to distribute to others -- and also work out general ideas about my funeral. It will happen one day -- hopefully many decades from now -- so I want my family to be able to follow my wishes with ease. One less burden for them to carry.
My weight has been holding steady for the past few weeks. I am really pleased with that. My appetite is fine and my tastebuds are completely back to normal. It is wonderful. I am going to enjoy this simple joy for as long as I can. My hot flashes are still on-going but they have been a little milder lately. My hair is growing back and so are my nails. My next task is to pamper my skin back to its glory. It is rather dry right now and very sensitive.
I am still thinking about the reconstruction surgery and wondering what decision I will ultimately make. I still do not see the advantage to removing my right breast. However, I am still thinking and praying about it. Somewhere there is a right choice for me.
That's it for today...
Apr 6, 2009
I received an email today from another old friend who still works at that company. Robin died on Sunday.
I still cannot bring her face to my memory. I cannot think of any conversations that we may have had during my time of employment there. All I have is a general feeling that I didn't dislike her and that I probably felt that she was an okay person. We worked in different departments and probably did not interact too frequently. But with all that said... someone who has crossed my path in this lifetime died of breast cancer. And while I don't feel like I know her really... the loss is still real.
Last night, I had an emotion wash over me that really shattered my peace of mind. One day, I might be dying from this disease too. The actual thought that I had was... what if I only have another 5-10 years? What if that's all there is? Have I done enough? Been kind enough? Left a legacy that is positive and lasting? Have I been a good steward over the life that God gave me?
I just didn't know what to think.
And then this morning I learned that Robin died. I will be honest, it took a little pep out of my step today.
Today, I'm not dying from breast cancer but the possibility of reccurence is real. And if it comes back, it might be unstoppable. That's a hard notion to bear.
Life is short. And right now, there is a family grieving the loss of a daughter, sister, aunt, mother, cousin, friend... sadly, it is a scenario that will play out again and again and again this year.
Robin was loved by her family and colleagues and she will definitely be missed. The email I received mentioned her courage and how she taught others how to weather adversity by the way she handled her illness. I don't think I do that. (laughs) I can't imagine what goes through your mind when you read my posts... but this much I know... if this disease takes me out...
Y'all BETTA say something nice about me. :) Even if its something as frivolous as... she kept her toes painted "real cute". LOL...
...just don't forget me.
Apr 3, 2009
I have read many articles about making the transition back to "normal" life. Many cancer patients find themselves feeling lost because they come to miss the reliability of seeing the medical team so often. Everything becomes more frightening because you're on your own again.
I'm starting to feel some of that edginess creeping around me. I had a little anxiety when I transitioned from going to the cancer center every week, to every three weeks. And now, I'm feeling some anxiety about not going to the radiation center every day. Its weird because while you're going through these treatments, you look forward to the end. And then when you end, its like stepping out into nothingness.
Right now I'm wondering if I'll be as good as I was before this. I know that I've been changed. My mind isn't quite as sharp; I forget things even more easily than I did before. My body definitely isn't as strong as before. My left arm movement is limited. I was making progress with my exercises until the skin started peeling. I stopped exercising because I was afraid of aggravating the skin issue and possibly hurting myself in a different way. Plus, it hurts like hell to move it around.
If I had to say it out loud... I'd have to admit that my heart is pumping a little kool-aid these days. (smile) Not sure if a lot of you are familiar with that phrase... we used to use it back in the day to describe someone who was weak or scary. That's me right now... both weak and scary.
A part of my heart has grown wings and wants to explore the world and live bigger and bolder than before. But another part of my heart seems to have shriveled. More afraid of being hurt, being left alone, having to go through all of this again. I was happy to have a boyfriend when all of this started; partly because it was so wonderful to have someone by my side through such a hard period. But also because it was a relief not to be out "there" looking/hoping to find a good man. My thoughts initially were... damn. If it was hard/damn near impossible to find a good guy before cancer, what in the world will it be like afterwards?
Honestly... I still think that often. And I don't have an answer. So, my heart has sort of shrunken away a bit, worrying that I'll be going through the rest of my life with this anxiety nagging me. I've got to examine how I will get over that feeling.
On Tuesday at chemotherapy, I had a new (I should say different) doctor come and talk to me. I think he was a resident fellow. His name was Dr. Lee. (shrug) He was rather dry but not totally unpleasant. Not as jovial as Dr. Kirkel -- the other resident doctor who worked with Dr. Siegel, my oncologist -- but he seemed quite knowledgeable. We talked briefly about the medication that I would be on for the next five years. Tamoxifen. He told me about the drug and its side effects. And yes... he scared me deeply.
Tamoxifen is taken to help control the return of the cancer. The problem with the medication is that it seems to have some harsh side effects. One side effect that affects 1% of the patients that take it, is uterine cancer.
Yep. You read that right. A drug that is supposed to save me from breast cancer could possibly give me uterine cancer.
The logic is that the benefits of the drug outweigh the minimal chance of contracting uterine cancer. It will likely keep my hot flashes going (which I'm grateful that they have been very minimal lately) and lots of other happy things along those line. Numbness, blood clots, memory loss, fertility issues... lol. All of that. There is a lot of interesting information about the drug on the internet.
A lot of women stop taking tamoxifen because they feel okay after awhile and think they don't need it, or they grow increasingly afraid of what the drug may be doing to their bodies. And a lot of the women who stop taking it, have a recurrence of cancer.
For one, I don't want to go through any of this again. But two... if my cancer comes back, it will be more aggressive, more difficult to treat and more likely to kill me the second time around. So, while I may not like these side effects I can guarantee you that I'll be taking this medication for as long as they tell me to do so.
I am trying not to think about the side effects too much. Like with every other step throughout this process... its usually a choice between two not-so-great choices. So, I will go along with the choice of tamoxifen and continue to pray that my side effects will be minimal and tolerable in my life.
I am considering starting a different blog -- or expanding this one -- to more fully explore/explain/discuss being a young african-american woman with breast cancer. I think I've gained a lot from expressing my feelings this way. So I'm going to experiment with expanding the reach of the blog. I keep wondering whether or not I want to step into that space in the world -- as the "cancer girl" and deal with all that will undoubtedly come along with it. Or if I really want to just finish my treatment and then put this behind me as though it never happened.
I still don't know which way to go. Sometimes I just think that I cannot live with this mantle over my life and then I think about all the women who will come after me. Knowing that they will go through these same emotions and fears and I feel like I'd be doing them a disservice if I didn't try to leave a lamp on for them to find their way -- even if its a dim bulb in the wilderness.
What do you think?
Oh... almost forgot to mention an interesting conversation that my mother and I had the other day. I was looking through my chart (once again) while waiting for treatment at radiation. And I read the plastic surgeon's report to Dr. Siegel. She mentioned a few things that bothered me... but the one statement that really pushed my buttons was that she wanted to encourage me to consider removing my right breast and having both breasts reconstructed at the same time.
Her reasoning was that once I've had the TRAM flap done for one breast, I will not be able to use that abdomen tissue for the other breast if I should need to go through this again. My mother agreed with her and felt that it was okay to do so they could be even and match.
It makes no logical sense to me to cut off a perfectly good breast for reasons of symmetry -- that won't exist anyway. It is true that my right breast could become cancerous in the future. And if it does, it will likely require a mastectomy as well. But...
I cannot make the decision to cut off my breast and I know there is nothing wrong with it today. Other than it being very large -- and that's not a crime -- that right fabulous boobie isn't bothering anyone. At least not enough for me to have it end up in the scrap pile for no good reason.
But... yet again... I am forced to consider something that bothers me, and to weigh the options against a different outcome that bothers me as well. I have been thinking about whether or not to utilize the plastic surgeon that I met with back in December. Although she came highly recommended by the general surgeon that I ended up not using, and also by my oncologist (who I really think the world of)... I just didn't feel much love and rapport with her. According to her report, I should plan on getting my reconstruction in 6 months. That is plenty of time for me to consider finding a different surgeon if I feel that is necessary. And then... further consider whether or not I should have my perfectly fine boobie cut off and then replaced.
Oh well. Another day. More life changing decisions.
What do you think? About both things? Starting/expanding the blogs and possibly removing the other breast and reconstructing them both.
Mar 31, 2009
What I'm feeling right now is more of a dull ache that is throughout my body. In that specific area, my skin and muscles are tender to the touch -- much like a bad sunburn. It is most uncomfortable when I lay down to rest and/or sleep (which is actually quite often). But the pain isn't so sharp that tylenol can't take the edge off and allow me to be more comfortable.
I'd take a picture but it is extremely disgusting looking... so I don't think I should share that with you. It is difficult to apply the creams that I've been given to my skin because of the tenderness and the rawness of the wound. I was alarmed this morning to find that so much fluid had expressed through the wound through the night. It had leaked through the bandage and into my nightshirt. However, when the doctor looked at it today -- she told me that it was quite normal.
I don't think that after all this is over I will ever think of normal in the same way again. Everything that is absolutely the antithesis of what I think normal is -- is being labeled as normal now. Its mind-bending actually. But, its okay.
Oh, I lost the last little fingernail that was holding on today. While waiting for the radiation nurse to look at my wounds, I was fumbling with my purse and my chart and pop! off it went. I actually laughed out loud. It threw her off for a moment and she started to move quickly to find me bandage. I just didn't need it. But luckily, it took a long time for this nail to fall off, long enough that the nail underneath has grown almost to the end of my finger. My nails are looking much better (to me)... however, I don't think they look as good to other people. The look on my friend's face Friday night when I showed my hands to her, reminded me that where I see progress others may not. And that's okay too.
My hair is still growing in nicely and its still really straight. I was told by someone (can't remember who at the moment) that in a year or so it may return to its previous state. Kinky and wavy as opposed to straight. My gray patch returned and I am actually quite happy to see it.
I also noticed today some burned skin on my neck. And I realized that it is more radiated skin that will likely slough off in the near future. I'm hoping that it won't blister and peel like the skin around my breast/and under my arm because it doesn't appear to be as burned as the other skin. Of course, I know nothing... (haha) and eventually everything I think I know turns out to be untrue. So... we will see.
I felt pretty bad this weekend. I had a grand time on Friday night and my spirits were definitely lifted from spending time with friends. However, Saturday and Sunday were complete busts. I could barely walk or stand for long. My sleep was fitful and I was achy all over. I think that the accumulation of radiation runs me down more than I expect by the end of the week. That's a guess.
At any rate, last week was really emotional. I'm hoping that this week will be more peaceful and that I will get some much needed rest.
I was feeling philosophical earlier this evening... reflecting on my life and the relationships that I've had over the years. I was going to write something about living above regrets and finding peace and solace with the choices I've made. But now, I'm not thinking that any of that needs to be articulated (in detail) tonight. Basically, I'm pretty tired. I've already taken my tylenol pm and am waiting for it to kick in. Tomorrow will be a long day... chemo for a couple of hours and then radiation. So, I imagine that tomorrow evening... I won't be very chatty.
I'm planning to post a new picture of myself soon. (as soon as I take one, haha) I don't look like Uncle Fester anymore.
...some of my cuteness has returned.