Love through the fear of cancer

Learning to love through the fear of cancer. 


*Disclaimer:  I have NO idea what I'm doing when it comes to love and relationships. My track record sorta stinks and I'm figuring stuff out as I go. Take anything you learn here with a grain of salt. Preferably the size of a small mountain.*

The past couple of weeks have been a bit rough around here. I'm slightly stressed out -- pinktober tends to do that to me -- and my boyfriend has been slightly stressed out as well. Two stressed out folks tend to stress each other out, you know? The escalation of madness...

While we've been tiptoeing around each other trying not to get on each other's nerves, I watched the relationship of a friend completely implode via facebook. It was like watching a skyscraper fall in super slow motion. S-U-P-E-R-S-L-O-W motion. My heart ached for them. I didn't know his girl, but I was aware that she was dealing with a tough cancer diagnosis and treatment. Over the past few months, I've tried to offer helpful and insightful advice without overstepping my boundaries. I thought that I was making myself clear when I shared with him that dealing with his girl through this transition was going to be tough. I don't think I got through to him. The final blows were hashed out over my news feed in the middle of the night. Each post was dramatic and heart wrenching... and well, just mean. I knew from our conversations that he loved her deeply. I knew that he was scared for her and for himself. But if I didn't know it... I would not have seen it that night.

Ugh. Love can be so hard sometimes.

Flip the page to me and my guy. We're still in that ooey gooey stage of love. We can sit in a room together and not talk and be completely thrilled. I like that about us. But what I don't like is that when something is bothering us, we struggle like hell trying to articulate that to each other. Something bothered him. He didn't tell me. I felt it though. I asked him something and his answer pissed me off. I got silent. I stayed silent for a couple of days. I slept and fidgeted, trying not to cry for a day or two. I was so upset I questioned everything. I even thought about breaking up, of just living my life like a hobo and skipping all this fairytale happily ever after stuff.  Who needs a Cinderella version of life anyway?

I was mad. At first I was mad with him. Then I was mad at myself. Finally, I realized... the choice is yours Nicole. You're designing this life. Do you want him there or not? I realized that I did want him there. Very much. 
(step 1: acknowledge or remind yourself that what you want is what YOU want... and make no apologies for wanting it)

You see, while I was being silent... he reached out to me. He tried to nudge me into speaking but all I had was confusion and anger in my head. I didn't want to comment out of fear that I would flip out. I did not want to flip out. After watching my friend's relationship meltdown on facebook, I had a great idea what type of chaos follows flipping out instead of thinking things through. I chose silence and one word responses.  
(step 2: be mindful of the way that your previous patterns of behavior may have resulted in your not having what you want)


After awhile, the tables flipped on me... There was a short period of time when he was silent. *gasp!* I WENT BESERK in my head. And in those moments, it dawned on me that I was being unproductive with my silence. So I spoke. He spoke. I shared what was bothering me. He explained his perspective. I understood. And that was it. Our "fight" lasted a couple of days and it wasn't much of a fight at all. Just a lot of silence and pain. 
(step 3:  when you figure out that you are wrong, fix it. do not let pride keep you from reconnecting to your love)

In both stories there is a common denominator of cancer. I am not sure that the "what" of our two fights matters as much as what the fights themselves represent. As I said, to my friend's relationship I am totally an outsider and just an observer. I only know what he's mentioned to me in passing and what I've watched unfold on facebook. That's not a lot of information. But in this world of social media, it sort of is. Watching them reminded me of the way that my previous relationship just fell apart during my treatment. I did not want that for them.

There is something about the emotional pain that envelopes you when you have cancer that skews your world in strange ways. Survivors express that pain in different ways -- some people scream and fight, others get silent, some pretend nothing bothers them and they're just happy, others are bothered by everything. But the bottom line is that we're all just dealing with it. In our own way, we're struggling to find our voice and express our pains and our fears... without drowning other people in that agony. And if we're honest... many of us are just terrified. And trying not to be. The person who is loving you is just as scared though. And that is where I, the survivor, realized that I had a job to do. I had to reach down inside and find the strength to reach out to my love and reconnect. He didn't know what upset me. I had to articulate that to him. Otherwise, in my attempt to protect him from all of my "stuff" (pain, fear, etc.)... I was pushing him into a corner.

Its been years now since my diagnosis. The only reason cancer is still on my mind so much is because of my role as an advocate and this blog platform. I found a reason to live here. I mean more than breathing and walking. I found my purpose here. That is my choice so I'm happy with it. But my choice means that I am constantly reminded of that pain. The kernel of fear that lives in the pit of my stomach really never goes away. It gets silent for awhile and then something happens to jolt me and it pops right back up. Though I never uttered the words to him, at the base of my silence towards my guy was that fear. It colors everything. The reason why I was angry had less to do with the topic we were in disagreement about and more to do with my fear that I just won't be here forever.

Cancer colors everything.

I believe that when my friend and his girl were fighting... somewhere in the base of his rants and hers was this same kernel of fear planted by cancer. I am praying that they find a way to realize this and get back together.  I'm sharing all of this with you to say... whatever you're going through (if you're going through something)... Hold on. With both hands. Your feet. Your toes. Your finger tips. Whatever. Just... hold on. Seriously. Cancer may have stolen a lot from you, don't let it take away your love too.

Life presents all of us with tough, traumatic moments.  They won't all be cancer-related but they will still be hard. How we learn to navigate through those moments is the key to finding our joy and our happy space.

(step 4: be happy. smile)



Lymphedema sucks

LYMPHEDEMA SUCKS!

*yeah, I said it*

Although I've been dealing with lymphedema for a few years, I must admit that lately I really am not doing a great job managing it. That makes me sad and it frustrates me. I am working really hard to finish my book as well as publish this blog. That means that I sit a lot for long stretches of time with my computer in my lap just typing away. I can be so engrossed in my mental work that I forget to eat or do my exercises. That is not good.

I spend a good amount of time with my boyfriend -- especially on the weekends -- and we're kinda couch potatoe-y too. Our time together is usually quiet; we're on our computers together, watching a show on television, sitting in a bookstore or a coffee shop talking or reading. The time together is great. I enjoy his company. But if we don't get more active, I'm going to have to slice off some of the time we spend together just to ensure that I'm doing what I'm supposed to -- exercise and massage to control my lymphedema. 

I am challenged because when I'm in a zone, I rarely want to stop to do anything. I'll go to the bathroom but that's it. Its great for me creatively but horrible on my body. Right now its 4 am and I'm just getting in bed. (I never slept at all last night) And so... my left arm has been bugging me something serious. I noticed about an hour ago that my ankles were swelling from sitting still so long. I fell asleep in the chair for a short while -- with my arm twisted up under me.

*sigh*

I am exhausted.


I keep asking myself why I'm pushing so hard. And I don't really know.  I can easily get lost in my thoughts and writing... and not realize how much time has passed since I last moved around. I know that to some people, sitting still for hours just reading and writing feels like punishment. For me, it is nirvana.  Until I realize that I haven't eaten for hours or moved for hours and now my body is rebelling.

I simply must do better. I was just online reminding myself of the things that I need to do to take care of myself and my lymphedema.  What I need to do is basic:
  • Regular exercise - I need to make a commitment to myself to walk at least 30 minutes every day. No excuses. I want to work up to walking for an hour or running for 30 straight minutes.
  • Regular massage - I have a large electronic massager that I use to massage my arm. Well, I'm supposed to. I try to use it at least once a week. 
  • Lymphatic massage - Although I did go through physical therapy for a couple of months after my lymphedema was diagnosed, I was not taught how to administer lymphatic massage for myself. Thankfully, I have found several great videos on youtube that have shown me what to do. When I do it, it is fantastic and I see results pretty quickly. I just don't do it like I'm supposed to. 
  • Elevate my arm regularly - I fail miserably at this. I am supposed to rest my arm in an elevated position when I can, and when it seems that the swelling is coming back. I have been doing it more at home but when I'm out, there just isn't a way to do it and not look like a weird freak to other people.
  • Compression garments - this is the only thing that I do every day. Without fail, I wear my sleeves. When my hand shows signs of swelling, I will put on a gauntlet to work that fluid back up my arm. But I am slightly failing here too because I need new sleeves and I haven't made the investment yet. At a cost of $150 for the set, it just isn't high on my list of priorities. I may need to readjust my thinking.

I'm also having major difficulty with my sleeping position. I lay on my side. I have slept on my side since I was a small child. Unfortunately, I sleep on my left side -- and that is my lymphedma arm. Which means that my arm often gets smashed all night with the weight of my body on it -- which only makes it even more difficult for the fluid in my arm to move around. I am slowly making incremental process in forcing myself to sleep on the other side.

When I crawled into bed, I felt tired and I was so angry with myself for allowing things to get so out of wack. I am having a hard time finding a balance. I want to get my life (and my lymphedema) in balance. But on this issue... I feel really alone. The people in my life have no idea what I'm dealing with and I honestly can't tell them without feeling like a let down. Lymphedema sucks. It really does. And knowing that there is no cure for this and I will always have to worry about controlling this swelling, makes me irritable...


Those who are affected, how do you deal with your lymphedema? 

Nicole speaks about her life with breast cancer



This video was made shortly after the end of my breast cancer treatment. There is a link to it on the blog page. I haven't watched it in forever, but I just read a really sweet message from a college friend about it and she brought a tear to my eye.

She told me that she remembered the party girl I used to be (laughs, see I told you...) and she felt that even through all that I had been through I was still very pretty. Considering that I'm feeling old and schlumpy these days... that made me feel really great.

I have the fortunate blessing to meet great and wonderful people every where I go. And even though I rarely sit in the same space for long -- I love the fact that those friendship threads are always there ready to be picked up again. It is such a huge blessing in my life to meet people and make friends every where.

I don't love the way I look in this video (well, my makeup is awesome) but I do love the honest way that I spoke from my heart. And I love that they edited out the parts where I cried.

I always cry.

But... good times! Even when its bad, its good because I am alive.

How alive are you today?



Many thanks to the wonderful people at Someone With... for this wonderful opportunity to be pampered for a day and to speak out about what my life is like with breast cancer. Be sure to go to their website to learn more about this awesome group -- they provide a shopping portal for items needed by breast cancer patients. 

http://www.someonewithbreastcancer.com/



Published -- Things breast cancer taught me: Bahrain Confidential


Woohoo! I'm published in Bahrain!


Some months back, I was contacted by a lovely woman in Bahrain and asked to contribute an article to the magazine, Bahrain Confidential. I have never been to Bahrain and didn't know anything about the country at all until the mid-90's when I found myself in school with a few young ladies from the country. But I thought this would be a great opportunity to connect with other women in another part of the world.

That can't be a bad thing, right?

*Happy dance break!*

The magazine published yesterday so I can now share the article with you and my joy at being published in this beautiful magazine. Please feel free to check out the online version of the magazine here (my article starts at page 72):  http://issuu.com/pro-design/docs/bc_october_2013_full_pdf


The article is an adaptation of a post I wrote awhile back:  8 Things breast cancer taught me



Breast cancer is not a test of life I would put on anyone. However, as in all things, your attitude
towards the hard thing you're facing makes a difference in how it affects your life. I am fortunate that my cancer was caught before it spread to other organs. I am fortunate that my treatment resulted in me being NED (no evidence of disease). Not all women who are diagnosed with this disease are as lucky. If you are metastatic, my lessons from this journey may seem shallow to you. Your lessons will probably be more profound, or simply different. I believe that is okay too.

I think that I can sum all the lessons up in just a few words: 

Be grateful for whatever you have (the good and the bad) and as much as you can, live and enjoy your life.

Someone, somewhere is so happy that you are a part of their life. Hold on to that when it seems hard to go forward.



Always a bridesmaid...

I had a brief conversation the other day with a girlfriend. Just chatting about nothing much really and out of the blue she asked me... "so when are you getting married?"

*scratches head* 

Wait... what?

Luckily we were chatting online so she couldn't see the puzzled look I surely had. I laughed a little and said that I had not received a marriage proposal but I would be sure to tell her when or if I ever did. We laughed a bit more and ended our chat but her words rattled in my head for quite some time.

...so when are you getting married? 

*sigh* 

I have asked myself that question many times. I have listened to people make snide remarks about my single status for many years. To be honest, it stings. Not always, but sometimes it does.

I've been engaged before. A very long time ago. He was a really nice young man. My family loved him. But I found myself losing my identity as I struggled with the boundaries between being Nicole -- and exploring what that meant -- and pleasing my boyfriend. Eventually, I ended the relationship and the engagement. In hindsight, I wish I was more mature and better able to articulate my feelings and concerns. My fear was that I would not be a good wife to him. I did not believe then that I was able to promise to care for anyone for a lifetime.

Fast forward 20 years... and now I'm in a great relationship with a really good guy and it seems that there are many people around us who do think that we're destined to be wed. My thoughts? I don't think we're there yet. At least that is what I say to myself. But, I think that the deep down truth is that... I'm always the bridesmaid. Even when I turn down the opportunity to actually be a bridesmaid, that's the role I have.

Yes. I know that it doesn't make sense... but when do I make sense? (laughs)

So, after thinking about it for a couple of days, I did the unthinkable. In my desire to conform to my twisted sense of "always a bridesmaid"... I actually tried on one of the bridesmaid dresses that I have hanging in the back of my closet.

*somewhere someone just howled with laughter -- I heard that!*

One of my dearest friends married his bride 19 years ago. That dress hangs in my closet and is a reminder of one of the most beautiful weddings I'd ever attended. Yes... nineteen years ago. And today, I actually pulled that dress down and tried it on.

*deep sigh*

Well... that didn't work out at all. Granted, I've been through some things in the 20 years since I was fitted for that dress. And I've gained a pound or two. Okay... maybe 40 or so. Don't judge me! (laughs)

But lawd... that was a mess!!

I tried to squeeze my fat arms into the little sleeves and well, that didn't work at all. I had to give up on the lymphedema arm -- because that was doomed from the start. Once I figured out which way the little elastic thingy went and slid my other arm in and around it... I reached around to grab the zipper.

Ha! Oh. My. Gawd. 

So, here's the picture... I'm standing in my bedroom, gaping in the full-length mirror at a woman in her mid 40's... with a dress that is 7 or 8 inches too short, hitched up too high on her butt, with a lump in the back where the zipper should be flat. I could only zip the dress about a quarter of an inch before it was stuck, with one arm in a sleeve and another arm outside of the dress... and I looked in the mirror at this sad frumpy lady...

... and I chuckled.

When did I get old? And why, lawd why... did I think that I could fit anything that I wore at 25? Later on though, I went out to eat with my guy and suddenly everything we normally do just was NOT good enough. I was oddly dissatisfied with our regular stuff and I wanted something different. I yammered on and on for about 15 minutes -- it was meaningless babble about eating more salad and not eating fried everything -- and eventually we landed in the parking lot at a random Thai restaurant a short drive away. Finally in utter frustration, I blurted out... "I'M FAT!" and a tear formed in the corner of my eye.

He laughed at me for a minute until he realized that I was serious about this angst. I told him the story about the bridesmaid dress I had tried on earlier. Between deep chuckles and hearty guffaws, he asked me why I even still had the dress, let alone why I thought that I could still fit it. I couldn't answer. But eventually it hit me... because that is who I've always thought of myself as. Always the bridesmaid. Never the bride.

Never the bride.

That sweet man of mine, pinched my butt (which made me laugh because he's not that kind of guy) and told me that he loved all of me. We talked for a bit. He reminded me of all the things that went on 20 years ago and we both laughed. I remember a mention of Michael Jordan before his retirements and Arsenio Hall. Then he reminded me that when it is my turn to be the bride, I will have a dress perfectly fitted for me. All of me, fat butt, lymphedema arm and all... I won't be relegated to wearing a 20 year old bridesmaid dress. Because it will be MY day. Then he told me that I'd be a beautiful bride.

I smiled all through dinner.





No more waiting

I'm trying something new. Posting to the blog from my phone.

So far, this month has been pretty emotional thanks to all the politics going on about healthcare. As a survivor, I feel that life is simply too short to keep wasting time. Not that this issue isn't important but all of the arguing is just sucking up time that could be used differently.

I'm not here for that. Not anymore. Life is short and I want to enjoy my days. I am learning to bend more. To go for what I want more. Useless arguments just are not on my list of things to do.

The hard part about life is realizing and accepting that every day is a gift. None of us are promised tomorrow. You have to make the most of today. Are you doing things today that really matter? If not, go do that!


Pinktober, Obama care and the US Government shut down

I don't exactly know where to go with this post.

It is very early in the morning on October 1st. Today is the first day of Breast Cancer Awareness month -- across the entire globe. Today is also the first day that Obama Care goes into affect. (Obama Care is the nickname for the Affordable Care Act --  it can be thought of as a negative name or a positive one) And for almost 800,000 federal employees it is the first day of the US government's shut down.

*sigh*

In my life before my breast cancer diagnosis, I was very politically involved and aware. I had a career in political affairs that spanned well over a decade (if I say specific years, I will feel old). My diagnosis and treatment shifted my desire to continue to participate in the political process as work. I just don't have the energy or desire to fight those battles any longer. But as a responsible citizen, I do stay aware of political activities in my nation. While I absolutely love my President (and the First Lady as well), I will admit that I am not always a fan of his work. I do believe that he is doing a great job and the pride that I feel that a man of color is holding the highest office surpasses anything I ever thought was possible in my country.

That said, because of my health history, I was a supporter of the ACA from the beginning. I do not believe that the law is perfect. I do think it is good and very, very necessary. Being sick is a huge problem in this country and to believe that it isn't says to me that you're living the blissful ignorance of the healthy and unaware. If that is you, I will say a prayer that your health never fails you and you never have to experience firsthand the financial impact that a major illness can have on your life.

While I was in chemotherapy, I overheard a conversation that shifted my entire paradigm about life. Another cancer patient was talking to a nurse about his billing. This gentleman was paying for his cancer treatment out of his pocket. Yes. You read that correctly. He was paying as he went along for his treatment. I don't know what type of cancer he had but on that day, he was charged $16,000 for his chemotherapy treatment. SIXTEEN THOUSAND DOLLARS. Meanwhile, my insurance company was being charged $5,000 for my treatment that day. Now, five grand is an enormous amount but since he was uninsured, he had to pay THREE times the amount that I did. I had 8 rounds of chemo. And that was only ONE part of my entire treatment plan. If I had to pay any of that myself, I would have been unable to do that. And I had a good paying full time job. Many people do not.

Again, I don't know what type of cancer he had but I can guess that he had to have probably 4 or more infusions. At $16,000 for each infusion... just that one portion of his treatment plan would cost him at least $64,000. I don't know whether he had to have surgery or radiation... Let's not forget the costs of prescription drugs, hospital stays... etc. My heart broke. He looked able to pay it but I kept wondering how much his credit card would actually be strained by the end of all of his treatment.

That man had the means to pay for his healthcare. Which left me to assume that after it was done -- assuming that he was okay -- he would be able to afford to continue to pay for his healthcare. Most people would not make it to be able to pay for one round of chemo at that cost. I know I wouldn't. I probably wouldn't be here 5 years later to tell you about it. And that's real.

Whatever we may feel individually about the President, I hope that we all can remember that this bill is set to HELP millions of Americans who are unable to get insurance -- whether because they are underemployed, have previous conditions that prohibit them from coverage, or something else. And that brings me to my disappointment with the shut down of the government. While people play games trying to press their agendas, the real victims are -- once again -- the regular folks who work to keep all this going. It is all so mind boggling. The true irony of the situation for me though is that on the beginning of a month dedicated to bringing awareness to one of the biggest killers of women, our government is in a pissing contest over healthcare legislation.

Can we be more stupid if we tried?

I really don't think so. I'll leave it up to all of you to decide how you feel about this. Some of you may feel it is warranted. Others may feel like me, that it is stupid. Either way I really thought we were better than this. Since I do my very best not to discuss politics on this blog, this will be my first and my last post on this topic. However, I'd love to hear from some of you about your thoughts about the government shut down, Obama care (ACA) or whatever you choose to share.

**please know that I will be moderating comments on this topic and will delete comments that are threatening in any way. **

Let's talk about healthcare in the United States in the comment box. Let me know how you're feeling today. Hey... you're probably on furlough now anyway, so what else do you have to do?

*that was a joke*

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