Lymphedema drives me batty

I am annoyed and frustrated with the battle I'm waging with my lymphedema. I feel somewhat blindsided by the ridiculousness of dealing with an arm that seems to swell at the most inopportune times. The frustration of dealing with an arm that I've been told to treat as fragile... makes navigating life just a pain.

Sometimes I have to carry things. Sometimes those things are heavy. Yes, I have been told that I should not lift things with my affected arm that are over a certain weight but in all honesty, life just doesn't work that way. It doesn't. I have been on a few trips over the past few weeks that required air travel. I don't go anywhere without my laptop. And I do not let my computer out of my sight. So that means that I am tasked with taking care of my own things. In a perfect world that would be normal and make sense. In this crazy post-breast cancer world that I live in... it is a challenge. A really annoying challenge.

I look fine to most people. *extra fine to some really cute men too. :) *  So, the expectation is that a healthy young woman who looks to be okay shouldn't have a problem navigating with a computer bag. For the most part, I don't. But... when it comes to lifting said bag repeatedly in and out of cars, up and down stairs and ultimately, over my head into the storage bin on an airplane... all of that movement adds up to a collection of fluid in my arm and my hand. Despite wearing my compression sleeve and using the rollers on my bag as much as possible... I still know that my arm and my hand will swell and create a nuisance for me. The changing altitude of the plane will not help.

I send my apologies to the older lady on my row on the second leg of my flight yesterday who asked me to put her bag in the overhead storage. I sighed loudly while I did it -- was later chastised by my mother for doing it -- but I was annoyed. I know that she asked believing that I was a hippy young chick (she commented that she thought my compression sleeve was a sleeve of tattoos until she saw it up close) who should have not been put off by helping an older person. I was not annoyed by her request but the tone of expectancy surprised me. And the fact that a flight attendant never seldom helps me while they watch me struggle didn't help my attitude about it. Her tone softened later when she noticed me cringing and massaging my swollen hand a little later.

**yeah, I did it on purpose so that she could see that I wasn't poking my lip out because I was solely a jackass**

I don't know whether or not I'm upset that people assume that I'm okay or that they don't consider that I may not be.  I remain astounded that we all (myself included) tend to react towards others with so little compassion. In all honesty, aside from her really long fingernails, I didn't see anything about her that should have prohibited her from putting her own bag overhead. But just like she didn't know my story, I didn't know hers. All I know is that after a night of massaging my arm and my hand and getting some rest... things are better today.

I suppose that's all that I can ask for. I don't really want a bunch of special privileges but I don't know how I could smoothly say to her... well, I'm putting my own health at risk by lifting this heavy bag over my head, to add your heavy bag to the risk seems... well, risky. (laughs) But hey, its okay. My arm survived the flight and the lifting, pulling, dragging... and in a few days, I get to do it all again in reverse.

Oh, the joy!! I see some physical therapy in my future. So, expect to see pictures of me wrapped like a mummy in short order.




I still am not getting the hang of dating



I told myself, the last guy that I dated would be the last guy that I ever date. The frustration and sadness of dating gone wrong is just too much. Too much. But I'm feeling like that wasn't the right choice to make. I really do want to date again. I'd love to be in love quite frankly. I just don't know whether it is possible.

I am a weirdo. (laughs)  Takes a special kind of man to find all the various parts of me exciting and enticing. I laugh when I should be serious. I'm too serious when I should be light-hearted. Sometimes I use the wrong vernacular. I use slang incorrectly. I don't dress trendy. I don't have long luxurious hair -- neither weave, nor kinky or anything in-between. I over-think, over-analyze and often procrastinate. From my understanding, these qualities make me a little strange to some men. I'm not one of those cute girls from television and movies, who knows how to flip her hair and giggle (see above about the hair issue), who wears dresses that are appropriately tight and sexy (I have a few but they look totally different on my body)... I don't work out (well, not in the sense that most people do, I do my breast cancer exercises but its not cardio). I read and am intrigued by the most ridiculous things sometimes. I don't play video games. I no longer go to nightclubs. Mostly, I sit at home and fiddle around the internet -- learning new things, organizing a new business idea and writing. Again... not things that you hear all the sexy girls doing. 

But, I'm doing me. And at this point in my life... it is all that I can muster the strength to do. I am corny and goofy. I get nervous and fidgety around guys that I like -- sort of like I did the other day when hanging out with someone I really liked. And it was horrible. I've been kicking myself since our date ended and I just don't know anymore. I don't know how to do this right.

Why can't it be simple like it was in kindergarten? You like a boy and he likes you. You grab his hand and you go play in the sand box together. Why is it all just so complicated?

Just a girl. Hoping to meet a boy. And go play in the sandbox together. Is that wrong?

REPOST (from the Daily Kos): Monday Night Cancer Club: Working During and After Diagnosis and Treatment (with poll)


Last week I reached a milestone of sorts in my life as a worker: the conclusion of my relationship with my previous employer. This is an occasion about which I feel intensely ambivalent. The dealings I had with them were so unpleasant that I am glad that they are now behind me, and yet I am reluctant to accept that this may be the last full-time job I ever have.
In previous diaries I have mentioned the difficulties that I had with this employer, who basically moved to end my relationship with them when I suffered a complication from my chemotherapy just before my scheduled return to work, six weeks post-surgery. I sought legal counsel to file a grievance, and while I did not succeed in getting my job back, my attorney helped me obtain a reasonable settlement which compensated me for my lost wages as a result of my employer’s precipitous actions. (If anyone in SE Michigan ever needs a referral to an employment attorney, I have a good one for you.)
When I was in the middle of it, I thought that I would be happy to vent about it once it was done. I was angry to have been treated so peremptorily—given their unilateral decision about how to handle my illness, treatment, and recovery, and their refusal to consider making any accommodations. But now that it’s done, I feel a little different than I expected. I am angry, still, but I am also surprised and hurt to have been treated this way, when my former employer is allegedly a very progressive organization.  We had one formal conference with representatives from the organization and their attorney, at their attorney’s office. My attorney, the friend who accompanied me and I all rolled our eyes at the ostentatious displays on the attorney’s office walls of posters and photographs promoting union solidarity. Good for thee, but not for me!
The suddenness of the shift in their attitude was deeply disconcerting to me. I went from receiving messages of appreciation for my work overall—and for delaying my surgery by two full weeks so that an important work meeting could happen before I left on my medical leave—to being told that I could not return to the office or have contact with anyone associated with them, virtually overnight. My boss called me two days after my surgery, one day after my return home, to ask me some questions about locating files (which were clearly labeled on the computer desktop, if she had cared to look), and I answered her politely and thoroughly. I came back to work for a half-day exactly one month after my surgery, still in the middle of my medical leave, to take part in another important meeting that had been scheduled long before my diagnosis. But all of this evident dedication counted for nothing when it came time to making accommodations for an employee facing a serious health crisis.
In the end, of course, I have to feel grateful that it turned out this way. Most importantly, it was far better for me to be completely removed from such a toxic and unsupportive environment. I don’t think that I ever would have been able to count on them keeping their word about accommodations for chemo or any other aspect of my care, and the stress that I would have had to endure as a consequence would not have been good for my recovery. The stress I coped with during the five months of negotiations was also considerable, but at least I did not have to interact with them regularly and appear to be a contented worker!
And as it happened, because of their hasty decision, I was able to apply for SSDI benefits soon after my reduction in hours/wages, which brought me below the income ceiling for so-called substantial gainful activity. My application was approved a mere three weeks after I filed it, in another instance of a complicated outcome incurring no small measure of ambivalence.  Let me elaborate on that statement a little bit. Two months previously, I had gone into surgery to remove a tumor expecting to have minimal follow-up treatment. Instead, the diagnosis was so serious that my condition qualified me automatically for SSDI benefits as a disabled person likely to be out of work for at least twelve months, and quite likely permanently. If, that is, I managed to survive at all.
Last week, when the last transaction with my former employer was concluded—albeit not without additional effort on my part, since they did not adhere to the terms of our settlement agreement in terms of timing and notice—I also felt hugely relieved. I am still here, damn it, and it’s their loss that they didn’t figure out how to keep me during the toughest stretch of my recovery. I am still here, no longer entangled with them at all, and I relish the unexpected feeling of liberation.
I don’t know quite yet what I will do next by way of work.  I plan to start back slowly, by putting out my shingle as an editor and writing coach. In a college town like mine, there should be plenty of prospective clients. It’ll be important for me to learn how to apportion my time and energy appropriately, since I am still not fully recovered, especially from the chemo after-effects. Assuming that my fatigue levels will not interfere unduly, I think that having more non-family, non-cancer related activity will be good for me, too. In other circumstances, I think having that regular distraction/external obligation would indeed have been helpful for me all along.
It’s complicated, isn’t it? At least, that’s been my experience so far. I’d definitely like to open the floor to more discussion, with more focused questions, but first let me share a couple of provocative resources.
Apparently, it’s not unusual for people with cancer to face workplace discrimination. (I know we're all surprised.) I came across one interesting article in a 2009 issue of the JAMA that reported on a meta-analysis of studies of job loss by people with cancer and concluded there was a statistically significant risk of losing one’s job post-diagnosis. Perhaps the most unusual conclusion in that meta-analysis is that women with breast cancer and reproductive organ cancers, and people with gastro-intestinal cancers, were at the highest risk of job loss. Any conjectures why that might be so?
The Americans with Disabilities Act (ADA) has provided some protection to people with cancer, but of course there too the implicit message is that there has been a NEED for such legal protection. Straight from the EEOC, here’s a page of explanation of the protections the ADA offers. Of course, this is only a bare introduction to an extremely complex legal area. I could not have managed to obtain the settlement I did without having a lawyer able to apply leverage where he could.
Lastly, for those of us who are considering a change in jobs post-cancer, there’s this site:Cancer and Careers. I have only barely begun to investigate this site, but it seems promising. To start, it was created by some executives in the beauty industry who considered the prevalence of cancer among their own ranks and realized that there were many more questions than answers for someone trying to deal with a hostile, or perhaps simply an ignorant workplace environment. I admit, I'm impressed.
Now, for some discussion questions:
How and when did you tell people at work about your diagnosis and treatment? Who, specifically, did you tell? How did they respond?
Have you needed accommodations during treatment? How did you arrange for them?
Did you lose your job or suffer a demotion since your diagnosis? Have you willingly changed jobs post-cancer diagnosis?
What would you suggest to someone newly diagnosed, in terms of sharing this information in the workplace? Pros and cons—obvious and otherwise.
These are only the beginning, of course, so have at it as you will!
I planned to leave a discussion of financial impact of cancer for another diary—but if that’s part of your work story that you’d like to share now, please feel free to do so.

ORIGINALLY POSTED TO MONDAY NIGHT CANCER CLUB ON MON MAY 07, 2012 AT 05:19 PM PDT.

ALSO REPUBLISHED BY LUNDI CHANNEL.

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BOOK REVIEW: You have no idea (Vanessa Williams)

Disclosure: "This is a paid review for BlogHer Book Club but the opinions expressed are my own." 

I don't review books very often and when I do, they are usually books that are related to breast cancer. However, when the opportunity came up to review Vanessa William's autobiography (written with her mother) through the BlogHer book club - [You have no idea] I jumped at the chance. My thoughts were... who better to offer nuggets of wisdom about perseverance and resurrecting yourself after a major setback? If the first black Miss America (who lost her crown after those scandalous sex pictures came out) couldn't offer a girl like me some insight into navigating the tough stuff of this life... I really couldn't think of someone else who could without speaking directly about overcoming breast cancer.

Like most little American girls of a certain age, I grew up watching the Miss America pageant and often wished that one day I could be as pretty and graceful as those ladies were. When Vanessa won the crown I was about 14 or so. I watched the pageant that year -- as I usually did at that point in my life -- and I was blown away that someone black like me could be Miss America. And Vanessa was stunningly beautiful. Her black wasn't like mine to be sure, I mean her eyes are blue for goodness sake. But she was a black girl nonetheless and her win meant EVERY.THING!

I was sickened when the pictures came out and really disappointed when she eventually relinquished her crown. It felt like a personal loss. But, time healed my disappointment and Vanessa went on to have a fantastic career. So... know that I say this with a bit of a heavy heart...

The book was disappointing. I mean... REALLY disappointing.

You know how you look at your favorite celebrities and you feel like you know them, and then an interview or a special comes on about them and you learn all sorts of wonderful new "human" things about them that just endear them to your heart all the more?  Yeah... I was hoping for some of that. And sadly... Vanessa just didn't give it to me. The book was an overview of her life so yes, in that regard, I learned some new tidbits. But what I didn't get was the emotional connection to her life. The reasons and reflections about her journey and her struggles and her joys... I felt like I was watching a pretty and glossy movie about someone. But nothing that made me feel like I was right in having this imagined connection with her for all these years.

I am still sad about it. I will say this, the book was interesting. It just wasn't riveting. It was interesting to see the little insights that her mother provided about Vanessa's life. But, all the deep stuff I was looking for? Nope. Not there. All of the poignant and touching moments about her marriages, or building her career after the scandal...?  Nope again... didn't really exist. She mentions a sexual abuse that happened in her childhood. But she only MENTIONED it. She didn't examine it, twist it around as many folks who have gone through that type of trauma tend to do. She didn't give a deeper introspection about how that event may have colored the way that she looked at relationships or anything at all. It was a blip, written as casually as one would describe a turkey sandwich. Just... hey, and then this happened and I didn't know what to do. And then awhile later I was like... hm... that happened?

*sigh*

Would I recommend this book? Sure. If you're a fan, you're a fan and you might want the insights into some of the timeline events of her life that you may not have known about. But if you're someone who is expecting to walk away feeling closer to Vanessa Williams or feeling like you understand her more deeply... you might be disappointed like I was.

I will continue to look at her from afar and believe that she is beautiful and talented... but still, not quite like me.



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