i will be celebrating an anniversary soon

July 30th will be the 1 year anniversary of the day I was diagnosed with breast cancer. I remember the day clearly... the days leading up to it are a bit fuzzy in parts and I remember the day after my diagnosis. I took the day off from work because my head was a mess and I just kicked it with my boyfriend.

It was good to have a boyfriend then. Really good.

I found out the confirmation of my pathology reports over the phone. I was at work and it was just after 9am. The doctor was kind, especially considering we didn't have too much of a relationship. I saw him just the one time, when I went in for the biopsy and other than speaking on the phone that morning, have never talked to him again.

It must be difficult to have a job like that. One where you have to give difficult news on a regular basis. But I have to say, he wasn't cold or abrupt the way that people can be when they do something so very often. He was considerate and very kind. Which, in hindsight, was a huge blessing.

I was devasted on that day and honestly a part of me is still torn up. Time is making it better but its a slow process. I am healing... it too is a slow process. I am wondering how I will feel on the actual day. And how I will feel a year from now, and then a year from then... and so on.

I've been reading that many cancer patients have come up with different ways of celebrating their cancer-versaries. Some celebrate their diagnosis. Others celebrate the last day of chemo, or the day they are told they are cancer-free. Some people wait until they reach that very important 5-year milestone.

I don't know what I'm going to do that day. My guess is that a glass of wine will be involved. Maybe a steak at Ruth's Chris... or maybe I'll send myself some flowers and some cupcakes. I don't know. But now that I'm thinking about it, I think I need to start making some "happy plans" so that when the day comes even if I cry a little, there will be something to make me smile a little too.

Balance is important.

lymphedema concerns

Ever since I learned that having a radical mastectomy put me at risk for lymphedema, I've been a bit anxious about it. Lymphedema is a condition where an affected limb becomes swollen because the tissue collects fluid. A radical mastectomy means that not only do you lose the breast but you also lose some lymph nodes as well. Arm lymphedema
And that loss could result in swelling and problems down the line.

I've been watching my left arm closely. Although I was told that if I were to get lymphedema it would likely be years from now... that does not stop me from being concerned. Given that my left arm is still weaker than my right, I am becoming paranoid.

I know. I need to really give myself a damn break. (laughs) But I can't. Not yet.

Like I said, I've been watching this arm closely and I've begun to notice a very very slight swelling. At first, I thought I was tripping. But there are some changes to that arm. Slight for now, but I'm wondering whether or not it has anything to do with my back pain.

Always something...

Lymphedema is a chronic condition which means that unless I can figure out a way to head it off before it starts, I will be managing it for the rest of my life.

sometimes life is like a 3 stooges skit...

Yesterday was funny... but it wasn't supposed to be. I was scheduled for an MRI on my back so that my doctor could try to figure out why I was dealing with so much back pain. I've only had an MRI once before and that was last summer when we were trying to figure out whether my lump was cancerous. That was actually a pretty pleasant experience. Well, maybe not pleasant as my anxiety level during that time was HIGH but generally it wasn't a bad experience. The test last year was done at the Washington Radiology Center (that I recall) and everything was shiny and modern and comfortable. In fact, the reason why the test was so pleasant was because I never felt or heard a thing. I laid on a table with ear plugs, listening to the radio. And then it was over. Easy right?

If you've never had a MRI before... basically, its a large machine and the area where they put you into the machine is a big tube. You are lain on a narrow bed/gurney and slid into a large white tube. And that's it. So, naturally, I expected my experience yesterday to mirror that initial experience. It did not.

We started at 11:00am. I decided to go to the hospital alone this time because I know that my mom doesn't particularly like just sitting there waiting for me. I felt that since it was going to be a relatively mild and easy experience, I could handle it alone. I arrived at the radiology reception desk and was greeted by a gentleman who seemed just a bit harried. Surprisingly so considering it was so early in the day. I told him my name and why I was there and he replied....

"You're in the right place. But before you sign in, I have to tell you that one of the machines is down and we are now running 4 hours behind"

(blank stare)

Wow? Really? FOUR HOURS? How does that even work? (laughs)

I laughed (what else could I do) and was thankful that I had brought 2 books with me to read instead of just one. And I walked over to my seat. My initial reaction was to say forget it but I just couldn't do it. Less than 5 minutes later, I was called back to the reception desk and told that whomever had made my appointment had failed to get the proper authorization from my insurance company. Without that authorization, I couldn't take the test that day and would need to reschedule. I was sent packing, told to go back to my doctor's office and ask them to finish doing their job so that I could reschedule the test.

I was taken aback. The cancer center is usually pretty good about taking care of all the details. But what could I do other than take care of this mishap? Of course, I immediately worried that something was wrong with my insurance and started freaking out silently that I might have to pay for the MRI out of pocket. But I just started walking out of the hospital and down the block to the cancer center to try to take care of the situation.

Nothing moves quickly at the cancer center, but there was no reason for me to go all the way home without taking care of this small paperwork snafu. I explained my problem to one of the ladies at the reception area and she explained that it was not likely that I would get the needed authorization that day but she would try.

I settled on the couch prepared to wait up to 2 hours while things worked themselves out. Less than 15 minutes later I was called back to the desk.

Well... it seems that someone was a bit eager in their processing of my paperwork and failed to notice that I didn't require the authorization form that they had flagged my file for not having.

(blank face)

Basically, I had been deterred for an hour... for no reason.

Ha. All that was missing was somebody slapping me in the face and laughing. Just buffoonery...

I walked back to the radiology department at the hospital, laughing to myself. The gentleman at the desk was kind to me, while he fussed about working with people who didn't do their jobs well. All I could do was laugh. I figured the walk back and forth in the heat hadn't killed me, and the fact that I was hungry (can't eat for a few hours before the test) just gave me more incentive to stick around and get it over with.

Amazingly, I didn't have to wait four hours to be seen. I think ultimately my 11:15am appointment had me in the MRI machine by 1:30pm. That's about normal for most of my appointments -- a two hour wait.

This trip through the MRI was not as pleasant as the one last year. GW Hospital didn't have the fancy earplugs with various radio stations. And that machine rumbled and shook and made all sorts of noises the entire time. I am not claustrophobic but being in that plastic tube for what felt like an hour was definitely NOT the most fun I've ever had.

The technician complained that I kept moving which was messing up the images. I still find it hard to believe because I was jammed in there like a hot dog on a bun. (shrug) But, eventually it was over. I had to deal with having an IV stuck in my arm -- I really do not like needles and they could not use my port for the contrast. After I was done with the test, disoriented and slightly dizzy... the technician realized just as I made it to the dressing room to change back into my clothes, that she had forgotten to remove the IV from my arm.

It was just one bad move after another... all day long. But I didn't complain once. I did call my friend and shared my frustrations with her but I didn't complain to the staff. I notice more and more that I'm less likely to complain about something these days than I have been in the past. Not really sure why. Whenever I want to complain, I think about whether its something that is being done "to me" or if its a matter of circumstance. If its a matter of circumstance, meaning that it isn't that someone is trying to harm Nicole specifically... I just let it go.

Life is too short.

depression worries me and Farrah inspires me

I deleted my post from Thursday about going back on disability. Those of you who read the blog through the RSS feed (direct emails) got a chance to see my thoughts. I deleted it because I was worried about any fallout from discussing the job in a negative way.

(shrug)

I didn't say anything bad, but I was pretty emotional when I wrote it and I didn't take time to reflect on how I was feeling and the best way to approach the matter.

Bottomline, I'm back on disability. I was sent home on Thursday because the people in my office didn't think I was doing so well.

Now that I've had time to think about it and reflect -- and also consider the sudden death of Michael Jackson and Farrah Fawcett's death after fighting cancer for 3 years -- I have calmed down. The truth is that sometimes other people see you in ways that you cannot see yourself. I live in a bubble of sorts... I'm surrounded by people who love me and want to see me survive and thrive through this latest challenge. So, to hear from strangers (over the phone) and hear that people who only vaguely know me (my co-workers) that they are worried about my abilities... really was devastating.

Lately, I've been very concerned with my emotional health. Not that I feel like I'm doing very poorly emotionally, but some days I do struggle. Some days, it is HARD, hard, hard. I am not as angry as I was months back but the sadness... it is always pretty close by. And that frightens me.

Although I wasn't exactly thrilled with my job after I returned (things were very different)... it did get me out of the house and among other people. Being put back on short-term disability felt like being pushed back down a staircase you've worked to climb. I've been kicking myself, asking myself what I could have done differently, done better. And I don't know. There's always something that I think I can improve upon. I wonder if I'm too hard, not hard enough... am I doing this right?

There are no easy answers.

True to myself... I did a quick search for depression and breast cancer and also suicide and breast cancer. (yes, I did) I had to see for myself what was out there, what others have dealt with and gone through just to see where I fell on the scale.

I was mortified to learn that black women breast cancer survivors are almost 3 times more likely to commit suicide than other survivors. This includes a period of up to 25 years beyond breast cancer.

Wow.

Now, to put things in perspective, the number is relatively small considering the number of women who have to handle breast cancer... so its not like we're talking about an epidemic. But there is definitely a reported number of women who struggle with depression during and after breast cancer. And a small number of those women end up committing suicide.

Its a frightening thought.

I looked up depression because the fear of depression coming into my life scares me deeply. And the emotions that bubbled up on Thursday reminded me of a darker period in my life. I needed to head it off at the pass.

Naturally there are lots of reasons/contributing factors to the depression that are directly linked to breast cancer treatments -- including taking tamoxifen for hormonal treatments.

Arrrghhh... is there ever an easy answer, an easy choice on this journey?

Right this moment, I am trying to motivate myself to go to a birthday party tonight. Earlier this week, I really wanted to go. Now, I'm not sure. But then... after reading about depression and suicide and breast cancer -- I feel like I need to force myself out of the house and interact with people.

I think I'm going to go. I need to mingle among other people and laugh and feel free for a little while. I refuse to go down into the pit of depression.

Re-

Fuse.


Farrah Fawcett has never been a "hero" of mine. Well, maybe when I was a little girl and she was one of "Charlie's Angels". But generally speaking, I've only thought of her as "fluff"... pretty much the way I consider most entertainers. Though I didn't get to see her documentary her death touched me deeply. Every time I learn about another cancer death, it affects my mood and my spirit. Farrah's death actually has been more difficult for me than Michael Jackson's death. Because I know that she has exercised a lot of faith, a lot of courage and a lot of strength just to live to June 2009.

This has been an emotional and difficult week. Dealing with the death of others always makes us loook at our own lives and wonder about our mortality. Farrah had a rare form of cancer and she fought, fought and fought some more against it. In the end, she was frail and in pain... but she still fought. I admire that kind of strength. I don't know if I have it or not... but I certainly hope so.

The faith to keep trusting doctors, the faith to keep trying new treatments, the courage to get on planes and fly between countries looking for answers, the faith and the courage to say yes to the marriage proposal of Ryan O'Neal...the courage to keep smiling, and keep filming... through the pain and through the knowledge that the end was near.

Today Farrah is definitely my hero.

If I had enough hair, I would rock the "Farrah flip" in her honor. But instead, I will put on some snazzy trousers and some heels and go to this party like nothing's bothering me and my body is in perfect health.

being uncomfortable with vulnerability

I have trust and commitment issues.

There. Its out in the open for all to see and to comment. I've been working on it --on my perspective about love and relationships for awhile now. And until recently, I thought I had made good progress. But today, I'm back at zero -- wondering how to have faith in someone else. Faith that they understand what it means to love someone, what it means to be a family. And I'm wondering if its really possible to risk everything on loving (and marrying) someone.

Lately, all sorts of information has been coming my way and shaking my faith in love and in people. I want to get married one day, and have a family. At least in theory. But wow... marriage is a scary concept if you marry the wrong person. You could lose EVERYTHING, including your health or your kid's health.

In the best of situations, love is risky and scary. But having cancer, and having one boobie... isn't the best of situations. I would list all my ailments and issues but the specifics don't matter. What matters is that I'm a vulnerable sister right now. And I think about love a lot.

Thinking about the wedding yesterday and the faith that it takes to agree to marry someone and stick with them -- come hell or high water -- has consumed me today. Like everyone else, I know many people who are living in miserable marriages or going through traumatic divorces. My heart aches for them.

People in love seem to have an innate ability to practically cut the heart out of the person they love, if they are angry with them. No one can hurt you more than the person you love. I've been hearing some tragic stories of love gone bad. People losing their homes, finding out that their spouses are sleeping around or sleeping with prostitutes, and so forth... scary, scary stuff.

None of us are perfect. And even though our intentions aren't usually to hurt someone else, sometimes in trying to take care of self we stomp all over our loved one's feelings. I've done that and its a hurtful feeling knowing that you've hurt someone who loved you. But its worse when you're the one who has been trampled on.

In a tenuous economic time like now, and when I'm physically not at my best and somewhat reliant on other people to be at their best or at least true to their word... the notion of love is a very daunting one. I find myself questioning how anyone finds the strength to be vulnerable to another person. How do you risk losing everything in order to love and be loved by someone else?

I know there are no easy answers. And I know logically that the real answer is that you have faith. Faith in God, faith in love itself. But my heart... my heart is screaming that its just not possible. I go back to my question from a few months ago -- who's gonna love the cancer girl? And more importantly...will they be able to stand by their word and stick by my side?

I'm still thinking about Fran's death. Her husband was by her side all the way to the end. Even after he lost his job and found out that his wife's cancer had returned... he was by her side. Rubbing her feet, sitting with her at the hospital. Every day. Love like that -- love in action -- is rare.

Knowing that you are dying of breast cancer has to be devastating. But watching your wife/loved one dying of breast cancer and CHOOSING to be there anyway, every day, no matter what... that's incredible. That's strength. That's love.

misuse of the "cancer card"

I spent the evening at a very lovely wedding of a good friend. Weddings are tricky for me because I hate going to "couple" events solo. But, I almost always end up in that predicament. (shrug) What's a single girl to do?

I couldn't pass up the opportunity to witness the union of my friend and watch her joy and happiness. And since I am on a mission to continue to push myself out of my comfort zone -- and spend time among the living -- it was a good way to spend the day.

I've been to many weddings in my day. For awhile, I was on a wedding-fast. But I've since gotten over that (gotten over myself really) and feel privileged and honored when asked to share in a couple's magical moment of wedded bliss. Generally speaking, I love and enjoy just about everything about a wedding... except the bouquet toss.

I've been "single" all my life. And no matter how many times I have been called to participate in the bouquet toss, it never gets any easier to stroll to the front of the assembly and let it be known that yes, I am single and yes, I do hope to get married... someday to someone. So much so... that I will (in my good clothes and high heels) momentarily "fight" another sister (actually a group of sisters) for the opportunity to grab some good fortune in love and be the one who wins the bouquet toss.

Lots of good intentions... I'm sure that the bride wants her single friends to experience the love and devotion she's feeling on that day. But, for the forever single (like me) it just feels like more of a bulls-eye on my chest. Honestly speaking... I tend to sit out the bouquet toss. Good intentions aside.

It was my intention to sit out the bouquet toss tonight. I was a little tired. The day had gone long AND I walked around in 4 inch heels all day. I wasn't exhausted, but I had definitely lost a little pep in my step. Imagine the look on my face when I heard my name (FULL NAME-first and last) announced on the microphone to come to the front for the bouquet toss. My "date"... another good girlfriend, was called out too.

We were stunned. Had to laugh at the shock of it. But the classic moment of hilarity was when the maid of honor (another friend) came all the way to the back of the room to get us for the bouquet toss... and I tried to use the "cancer card".

As smooth as you please, when the maid of honor told us we had to come to the front... I tried to play my hand.

"I'm not going up there. I have cancer. I am tired."

I know. I know. I should be ashamed of myself.

It was a blatant MIS-USE of the cancer card. My "date" looked so shocked when I said it. She fell out laughing when the maid of honor replied...

"I don't give a damn about your cancer. You have been summoned to the front, so get to stepping". And then she stood there, mean mugging me, daring me NOT to get up and participate in the fun. Only a real friend would call you out like that. :)

My cancer card was soundly (and quickly) rejected. And it should have been. I was being a punk. And would have missed out on a happy memory had I remained hidden in my seat at the back of the room. After it was over, I was glad that I did it. That quick moment made me feel like a part of the day, instead of just a witness.

I didn't catch the bouquet (not too surprising). BUT... the maid of honor did. It was a set-up, and a good one. I smiled all the way home thinking about it. Karma is something else. :)

let's talk about cancer and money

As I type this, laying flat on my back with a heat pack on my neck/back... I am thinking about all the other devastating ways that cancer ruins lives. I just read a financial blog posting about bankruptcy and cancer and it forced me to think.

Its not enough to have a disease that could kill you, and its not enough to have treatments for the disease that make you feel like you're dying... cancer rips apart relationships by putting more strain on them than they can handle. Cancer also wrecks your financial future because the cost of treatment is enormous. If you're fortunate enough to have insurance through your job, the hit may be minimal. If you're not so lucky, or if you have to supplement your insurance with state/federal assistance... not only will you have to suck up your pride and grow some patience to get through the madness... you will be stuck with huge HUGE medical bills.

The number 1 reason for bankruptcy in this country is CANCER-related medical bills. At my last chemotherapy session, there was a gentleman sitting beside me who was paying for his treatment himself. I overheard the administrator talking to him about it when he asked how much his treatment cost for that day. I nearly fainted when she said that the total was over $16,000! For one day of treatment, almost twenty thousand dollars. Keeping in mind, depending on your cancer treatment you may need anywhere from 4 infusions to 20. Can you imagine? He asked about discounts for different things but he didn't qualify for any reduced prices because he wasn't using insurance. While insurance is helpful for all of us with it, insurance pays a reduced rate for the procedures, medications and treatments. For example, my chemotherapy infusions cost my insurance company $5000 each treatment. (just the infusion) Whereas this gentleman was going to pay triple that amount. Assuming that we were receiving similar treatments (from a financial perspective)... that's a drastic difference.

I don't know how they (the man and his wife) paid. He seemed stoic and calm when the administrator was talking to him. The wife seemed much more nervous. I wasn't involved and I wanted to cry.

And that's just treatment. The other things that people don't tell you about is that once you find out that you have cancer, you need to change your entire life basically. What you eat, what you drink, what you bathe with... what lotions you use, what you use on your teeth... depending on where your cancer is... your clothing is different, maybe your teeth are affected and so on. EVERYTHING is different after the day you learn that you have cancer.

I'm going to talk about something really "silly" but important for me. Bras. As many of you know, before cancer I was spending a small fortune on my lingerie because my breasts were much larger than average. And since I'm a girl who fully appreciates and expects luxury... I bought the best and prettiest lingerie I could find in my size. That meant that while many sisters were scooping up deals at Victoria Secret's for $20 or less for a bra, Nicole was spending $100+ for one bra. I bitched and moaned about it to myself but it was my reality so I accepted it.

Fast forward to now. I can't wear the bras I used to wear. Not because of the size - I have a prosthesis that I could put into the regular bra to wear. But because of the underwire. Bras created for larger-breasted women almost always have underwire in them to provide support. I've been told that there are bras for larger breasts without underwire - though honestly, I haven't seen any yet.

I cannot wear underwire because its too constricting for my chest. Since the surgery, some of my chest area is numb. Underwire could rub, chafe and eventually cut my skin in my breast area because the skin there is still very fragile and sensitive. And numb. So I wouldn't feel the destruction taking place. My doctors -- each of them -- have warned me repeatedly not to wear underwire bras. So, I have beautiful lacy items that I may never get to use again. Waste of money. And int he meantime, I need to find new items to wear that fit well and appeal to my sense of style.

Drama. Its not just finding bras and then paying whatever price they cost just to have them. Its finding a massage therapist who knows how to work with cancer patients to assist in helping me to get my body back. Its finding a physical therapist to work with, to get my range of motion back. Its keeping lots of suncreen (spf 70) and bug spray around to protect my skin. Suncreen to protect my very fragile skin. And bug spray because the slightest infection in the arm that was affected by my surgery could trigger lymphodema.

And it goes on and on.

Yesterday I talked about my back pain and how its driving me crazy. It is. And I continue to push myself because I want as much of my life back as I can get. I hung out yesterday and am paying for it today. I knew when I decided to hang out that I was making a choice but I needed the time I spent with my friends, so I hoped that my back wouldn't protest too much.

Eh. Its hurting something serious today but I will force myself to get moving soon. I just want to feel like it won't get really worse today.

But all of that to say... it costs to be sick. Beyond the active treatment of your disease, there are considerations about your lifestyle that you have to consider.

So... when you talk to someone that you know is dealing with an illness, if you're in a position to help them -- buy a cup of coffee, or something like that -- pass that kindness along. Although we're all feeling the pinch in this recession, the pinch isn't the same for everyone.

I've been reading and researching diet changes and I don't know how I will afford to eat the way that so many people believe is best to keep my chances of cancer recurrence low. Whole foods, organic produce, etc. cost a lot of money. Juicing daily, though good for you, gets expensive. The herbal supplements and such... are not cheap. But it is a balancing act, where somethings go up in the budget, other things will have to come down. And some dreams may have to be washed away.

I haven't figured out what I will leave behind in order to make these other things happen. But something will. It has to. I am single with no children. I've read horror stories about women with breast cancer whose husbands left, leaving them alone, sick, scared and broke trying to raise healthy kids in the meantime. Some women have lost their homes, trying to be treated for breast cancer. I know that I've been bitter and angry about my relationship ending... but I do feel blessed that at least we weren't married and then broke up. As much as my heart has been broken, my finances were not affected by the dissolution of the relationship. Not to be callous, but that's a huge relief - I'm sure for both of us.

Thinking about planning for retirement while paying medical bills and adjusting to higher living costs... is where my head is right now. Having fun, squeezing it in when and where I can, is priority for me right now. When I close my eyes and think about the ways that my life is different today from a year ago, there is still a lot of anger there. But its not as much as was there 6 months ago. And 6 months from now, I pray that it will be even less.

It is a good day. :)