I'll never wear a wedding ring

I call breast cancer the gift that keeps on giving. (laughs) I say that very tongue-in-cheek because I am always finding new surprises around the corner that breast cancer has gifted me with. You know that I wonder about love and dating and marriage a bit... But the other day, in the midst of a conversation with some friends online I had a startling revelation:  I will probably NEVER wear a wedding ring.

*gasp*  Clutch your pearls. Swoon. Faint. Get some smelling salts... did I really say that? Yep. I sure did. But that doesn't mean that I won't fall in love, get engaged or get married... I mean very specifically... I won't wear a wedding ring.

You know how we women get all giddy and giggly at the thought of having the love of our lives gift us with the most perfect expression of his love? How we dream about and drool over these shiny little baubles? Well, I'm not the biggest jewelry lover. I like jewelry, to be honest. But I don't like a lot of jewelry and I'm pretty particular about what makes my heart beat faster and what is just... well, nice but not my taste. So, here's the revelation I had... I have lymphedema. (But you knew that, right?)  And my lymphedema is in my left arm. And lymphedema brings its own challenges (cuz... breast cancer is that gift that keeps on giving)  Some of the challenges are interesting. I have to be very cautious about protecting my arm at all times. I am cautioned to avoid insect bites, bumps, bruises and such. I can't have needles used on that arm. Neither can I have my blood pressure taken with that arm. Those are tolerable nuisances. *though that mosquito avoidance gets real tricky in August*

But guess what else? I can't wear a watch, a bracelet or ... *drum roll*... a doggone RING! So, I'll never get to experience that exhilarating moment when the love of my life presents me with the ultimate gift -- that the whole world is supposed to use as a barometer to measure our love. (laughs -- we are so primitive sometimes)

Honestly though? I just added another line to my list of "it would be nice if he..." qualities that I hope to find in the man I've been waiting for. The new addition to the list is..."it would be nice if he was a creative thinker and could come up with an expression of love other than an engagement ring" because while I'm all about being a rebel and bucking the system... I'd hate to get a ring and never be able to wear it because it aggravated my lymphedema and my fingers swelled up to look like mini bratwursts or something....

Just another day in the life of a sexy, single, childless, still dating (though dating stinks), funny, sensitive breast cancer survivor.  *wink* 

Any suggestions for other ways that my love-to-be can lay claim to me so that the whole world understands that I'm taken? I'm thinking perhaps a lovely necklace or a ring on my right hand. What do you think?

I am so ready for Fall

This is probably the first time in my life that I am eagerly looking forward to autumn. But I really and truly am ready for summer to end. I like summer, I really do. It is one of my favorite times of year (spring is my all-time favorite season ever). However, it seems that this year I have answered more questions about this stupid compression sleeve than I ever imagined possible.

I hate this lymphedema CRAP!

I'm not mad with my friends or my acquaintances -- or even the strangers on the street -- who have inquired about my various sleeves. Just like this beautiful girl in this picture with her compression sleeve... it looks odd. I know it does. But I cannot help that. I have to wear a sleeve every day.

I have several sleeves that I interchange depending on my mood and my outfits. The only time I don't wear the sleeve is if I'm feeling really particularly vain -- going to a party or something and I'm wearing a nice dress -- and when I'm bathing or something like that. I have sleeves that are close (or supposed to be) to my skin complexion. I have a sleeve that looks like a sleeve of tattoos. I have a sleeve that is bejeweled with a very pretty and feminine design. All of that. And basically, all of my efforts to look fashionable are well... limited because at the end of the day my entire arm (and sometimes my hand too) is covered in a huge bandage. It is depressing some days.

I got used to wearing the sleeve soon after I started wearing it. Its not painful, and neither is the swelling in my arm most of the time. However, I'd be stretching the truth if I said that it was sexy or appealing in any way. *shrug* A girl has to do what a girl has to do.

I do my stretches and arm exercises. I massage my arm a few times a week. Usually with my hand but sometimes I'll use my large electric massage unit. But, I don't know... I guess I thought that after awhile this would go away. I know they said I'd probably be dealing with this for the rest of my life but I really thought that it would stop. That it would get better. That my arm would go down and I wouldn't have to maintain this crazy lopsided look. But... here I am a year later and the full realization that this could be forever is hitting me like a ton of bricks.

I've been upset for the past two weeks because my hand has been swollen. For me, that's unusual unless I'm traveling. The worst part of my swelling is in my upper arm area. About a week or so ago, my hand joined in the chorus and actually had the nerve to ache and hurt. *BLOWN!* I thought that perhaps I slept on it wrong. Or that it was a temporary issue because of the weather but when wearing the gauntlet didn't help immediately (the gauntlet is the small glove-like sleeve for your hand)... I had a deep revelation and all I could do was sigh. Once again, this mess is serious. I hate that there isn't a cure or a fix for this. I've been researching alternative options because I just refuse to go through this forever.

That's why I'm excited for fall to arrive. I need sweaters and long sleeve shirts. I need coats and long gloves. I need to hide this thing. At least for a few months. Long enough so that I can regain a little bit of mental freedom from breast cancer.

I've been shopping a little bit. Trying to prepare for the coming chilly weather. I haven't purchased a lot but I am keeping my eyes open for cute and sassy outfits that will allow me to feel sexy and hide this stupid sleeve. 'Cuz I'm sick of it.

~Nic

PS. I think the problem is that I've been over-exerting my left arm; carrying packages that are too heavy, working it out too vigorously... etc. So, I've scaled back a bit and I've resumed keeping my arm raised above my heart several times a day and things are getting back to normal. Of course, that's the new normal... not the old normal -- you know, the normal where things on my body actually match.

Weight loss: my BMI... made me sigh

Since its the start of a new year, I've decided (like many other folks) to take this time and focus my energy on doing better for Nicole. I didn't exactly make any resolutions for the new year, but I did decide to stop procrastinating about doing things that I know I need to do. Like focusing on my weight and my food intake.

I was a chunky butt when I was diagnosed with breast cancer. Yep, I'll admit it. But, I was still cute (at least to myself and my then-boyfriend) so it didn't stress me too much. I was bigger than I felt comfortable with but I was okay. When I began chemotherapy, I had to be weighed. Actually I had to weigh-in everytime I went to the hospital for any treatment. I hated it at first, but after awhile I didn't think about it one way or another.

The first weigh-in blew my mind. I weighed -- gasp -- 218 pounds. *blink, blink*  Although I'm reasonably tall (5'9") that's still a LOT of weight for my frame. I was mortified. I guess eating curry and white rice 5 times a week is bad for your diet. (laughs) I'm sure that the rum punches did not help.

Well, luckily my oncologist was kind to me and didn't call me a fatty to my face. What he did say though was that at my weight, the loss from the chemo probably wouldn't be as drastic as for some other patients who were smaller. And he was right. As the pounds fell off during the four months of chemotherapy, I still looked reasonably healthy to other people. I looked sickly to myself and to my family but the weight loss wasn't that noticeable (I think) to other folks.

At the end of the first part of my chemotherapy, I was down to 170 or so. Maybe a little less. Now, this may sound crazy but I liked that size on me. It looked okay -- well, minus the crazy skin discolorations and sallow pallor and no body hair.

Fast forward two years and I've gained a good portion of that weight back. I am still too sedentary (scared I'm going to fall and hurt myself). I can also thank my medication and the fact that my treatment pushed me into menopause. However, with all that taken into consideration, I am now just at 199 pounds. I'm grateful for that one pound that keeps me from 200 pounds (yeah, I'm vain) and really grateful that I'm tall and can sort of disguise my thickness but its a new year and time for a new focus. I decided to actively work on losing weight and being more diligent about what I eat and regularly detoxing myself.

Alright... so based on my recent history, I figured that a goal of 175 would be great. Not too much to lose and I could move slowly towards reaching that goal. Imagine my surprise when I pulled up a trusty BMI (body mass index) chart to see where I fell on that scale.

OBESE. *wow*

Well, depending on which scale you look at I'm either "overweight" or "obese". Ain't neither one of those sexy. At. All. I started looking at pictures that I've taken over the past couple of years -- after I did my radiation treatment and my surgeries -- and I look a bloated and uncomfortable mess. Puffy face, strange lopsidedness. Just bleah. It hit me that I've been internalizing the comments from friends and family who have told me that I looked great without measuring what "great" really meant. It meant, great for a girl who has been going through cancer treatment for two years. But in the grand scheme of things... my great was a little uh... less than stellar. *shrug*

Here's the kicker... my goal weight of 175 pounds (I do like being a curvy girl) is still too big. I'm still too high on the BMI scale. So I've had to adjust my goal weight down to 160 pounds. And I may have to adjust more to be truly clear of the obese label.

Yikes! That's far away from where I am right now.  I decided to fully disclose where I am starting from and where I'm heading to so that I can be accountable for whatever progress I do or don't make. I don't have a particular time frame to hit this mark. I just know that I have to get there and I have begun my work on making it.

*sigh*

I am one of those people who just doesn't like exercise. I've always been a clumsy kid. I trip over my own shadow while walking in my barefeet on carpet. (laughs) Real talk. Soooo... trying to run and catch a ball or throw a ball at the same time, not gonna happen partner. It just won't. And trying to outrun or out-swim someone else... yeah, that's not likely to happen either. Competitive sports do nothing to inspire or motivate me. Vanity however, and now knowing that it will help reduce my chances of dealing with this doggone breast cancer again, is a big motivation for the kid.

Another big motivation for me is my family. Genetics and bad eating habits are not on my side. Food is an important part of my life. I like to eat. I like to eat fried foods and sweets (cakes, pies, cookies, tarts, etc.). I enjoy a nice tall glass of sweet ice tea. Or lemonade. All sorts of bad for you food that make good memories when enjoyed with people that you like being with. But, when you start going to more and more funerals of people you love and have grown up with, it starts to hit you that its really not a game.

Diabetes and hypertension and heart disease and cancer run rampantly up and down my family tree. Obesity is not foreign to me. Morbid obesity isn't unusual. I watched one cousin struggle and struggle with a food addiction that she simply could not shake. Diabetes and its complications eventually took her away from us. Obesity issues took one brother before her and a sister after her. I think about all of them often. And my heart aches. And so on... I could name family member after family member... but the stories just aren't that different.

I've received another chance to get it right now that I've been rendered cancer-free. I can't waste it. I am not addicted to food nor alcohol. I'm just greedy and undisciplined. These are things I know about myself. How I'm fixing it is by learning all that I can about food, nutrition and being more aware about what I eat and what is in the food I consume. I am more aware of how I drink my calories and I try to combat that in different ways.

One thing that I do have to be cautious of is my lymphedema. It will (and has) flared up with the increase in activity. I know that its risky to do a lot of exercise because of it but I am willing to risk it in order to gain a health advantage in other areas. Hopefully it will be a good calculated risk and I won't end up making a mess of things. Realistically, there are emerging reports saying that working out with weights may not be as bad for lymphedema sufferers as originally thought. That gives me hope.

So... that's my story. I'm a chunky girl who wants to bring out her inner sex kitten. Well, let me rephrase that. I'm a chunky girl who wants her exterior to match the way she feels on the inside. How's that??

Can’t Afford Lymphedema Sleeves?

I have a cross-post from Toddler Planet which is a blog written by another breast cancer survivor (who happens to also be a rocket scientist I believe). Great blog by the way... but she posted some great information and I wanted to share it here in hopes that it will help a reader (or the friend or family member of a reader) with one of the many expenses that survivors have.

I suffer from lymphedema. I've complained a few times here about how much I hate this side effect of my mastectomy and how much the sleeves (which are absolutely necessary) put a crimp in my financial side. Well, there are some angels out here who are providing sleeves for free in honor of their loved ones who battled breast cancer. The details are in Susan's post below. Please take a moment to read about this wonderful opportunity and feel free to pass it along. Every little bit helps. Believe me.

P.S. I currently have three sleeves by LympheDIVAS and they are fantastic. Quite nice, very attractive too.

-----------------------------
Are you or do you know a breast cancer survivor? Please read today’s post and pass it on. If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check.

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with  LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors’ activities. By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them. They do this in honor and memory of their loved ones.

Crickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett’s Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

LympheDIVAs was founded by Rachel Troxell  and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve. Rachel continued to build the company during her later recurrence. Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application.

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here. http://crickettsanswer.startlogic.com/id8.html

To help change the law so that this medical garment is covered by cancer survivors’ insurance, stay tuned for more about the Lymphedema Treatment Act  when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn’t ask to get breast cancer, and the men and women who love them, there is now help for women who can’t afford lymphedema sleeves, a medically necessary garment not typically covered by insurance. Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook.

The first of (suspected) many complaints about my compression sleeve

Deep, deep sigh. I friggin' HATE this doggone compression sleeve. I have heard from other lymphedema sufferers that they don't particularly mind wearing their sleeves. I've been a pretty good sport about a lot of things on this journey with breast cancer but this sleeve irks me like nobody's damn business. Ugh.

I broke down and purchased this sleeve at the end of August. I was travelling to Atlanta the first weekend in September and I knew that the flight would cause me all sorts of problems. So, I went online (that's where I live) and found a sleeve that I figured would work.

The pros:

• ordering the sleeve was easy enough.
• the product that I chose seemed to be from a really great company with a heart for women struggling with lymphedema after breast cancer surgery
• I received the sleeve quickly -- it took me forever to make the decision to purchase so I had to expedite shipping in order to receive it before I left on my trip.
• the company who manufactured the product (lymphedivas) packaged everything really nice. Made me quite excited to use the sleeve when I received it.
• the customer service representative at lymphedivas was extra helpful when I needed some help/answers.

The cons:

• I picked the most horrible color imaginable -- its this medicinal looking putrid beige-ish color. Ick.
• the cost was a bit prohibitive to me. I think the sleeve and gauntlet (sleeve for your hand) cost me about $110 or so. 
• the sleeve started unravelling after about 6 weeks of use. I thought that was ridiculous. I will have lymphedema (most likely) for the rest of my life. A $110 habit every couple of months is OUT-FREAKING-RAGEOUS.
• I learned from talking to the customer service rep that sleeves are expected to last about 6 months. That's it. Six whole months. And... they suggest having at least 2 to rotate every other day.

I'm frustrated right now because I know that I won't make it six months with the current sleeve that I have. I must order a new one and soon. But I simply do not want to spend the money to purchase two new sleeves this time only to have to turn around and purchase two more a couple of months down the road.

Seriously? This is for the doggone birds. Its ugly. Its NOT sexy. It takes away from everything you want to wear and look like a normal human being. It causes far more conversation than you're usually in the mood for. Its relatively expensive...

...and I need it. (shrug) So, this is the last of my whining about it. I'll be ordering my new sleeves in a few days. I don't like it. But... that's my life right now.

If you're interested in checking out lymphedivas, this is their site:
http://lymphedivas.com/ 

Honestly, I will likely order from them again -- this time directly from their site.  I used a different site before but after talking to Joel (I think that was his name), I think that ordering directly from them will be the best course of action.  I am generally pleased with my experience. Just frustrated at the trial and error process of everything I have to use on this journey.

I still forget that I have to make changes



my lymphedema arm during physical therapy

 One of my favorite lines from one of my favorite movies is... "Youth is wasted on the young...". (Its from Its a Wonderful Life)  Whenever I find myself becoming wistful for my remember when days... that line pops into my head... "youth is wasted on the young". Today I am thinking it because it just dawned on me that I am at fault for aggravating my lymphedema this week. As a young person, you take good health for granted. You hurt yourself, you heal and then you bounce back... good as new. You rarely have to make lifetime adjustments to accommodate your changed body. Usually because your body just bounces back to its original state and you can keep it moving.

Well, I could not figure out why my arm was feeling so heavy. Or why it was swelling up. I was slightly alarmed but mostly annoyed. What in the world was going on? And how... HOW... was I going to deal with this crazy lymphedema if it just flared up for no reason like this?

Ha ha! No reason? No ma'am... there is always a reason, you just have to find it. Long story made short -- I aggravated my condition because I haven't been doing what I'm supposed to do. I haven't been walking every day like I should. I haven't been elevating my arm twice daily for 15 minutes. I haven't been doing my stretches and exercises. And ... I haven't been diligent about NOT carrying heavy bags on that side.

This past weekend, I attended (hosted actually) a brunch event for my meetup group. The sponsor of the event had supplied a few items to be given away to the participants. Since I don't drive and typically travel by subway, I moved the items from the box they were shipped in, to a bag that I could throw over my shoulder and keep moving. That's logical right? Wrong. At least... wrong for Nicole.

The giveaways were full size bottles of body wash and hair conditioner. I'll guess that with my regular stuff and the Dove prizes... I was probably carrying a bag that weighed maybe 15 pounds. Not super heavy... but too heavy for me to be carrying around on my bad arm. Which of course I did. Along with carrying my "I already know its too darn heavy" purse as well.

Ugh. I sooo hate it when I do stupid things because I'm not being aware and conscious. Carrying the products wasn't the worse thing ever. But it was part of a snowballing effect where I wasn't being a good caregiver for myself. I know better. I do. But I got comfortable and lax... and my body responded.

Sigh. I'll be taking my walk shortly. And elevating my arm. And wearing my compression sleeve. And I won't be pretending that I do not have to pamper myself and remain conscious that things are different now. I can do anything I set my mind to, I just have to be aware of how I do things and make accommodations for potential problems.

So sick of the sleeve... compression sleeve that is

Many breast cancer survivors wear compression sleeves to keep their lymphedema in their arm (and sometimes hands) in check. You probably have noticed these women around your town and wondered why they had on what looked like an athletic garment. I never thought that I would be one of those women but I am.

The sleeve itself isn't horrible but its awkward and well, not that sexy. I am supposed to wear it throughout the day and then take it off at night. But I actually keep mine on day and night, unless I'm going somewhere and I really want to look, well, normal. Its hard to be a hottie in a nice dress with a long compression sleeve on. LOL... it totally takes away from the look.

But seriously... I'm just sick of this thing. For one, I ordered the wrong color so it really stands out that I have it. I will say that they come in a lot of colors and patterns. But for my first one, I chose one that was a neutral color instead of a wild pattern or bold color. But its boring and I'm sick of wearing this thing. Plus, I don't think its working really. My arm is still swollen and its not going down. I'm frustrated. I can't afford to go back to physical therapy but I've got to figure something out. I can't go on like this for the rest of my life. Back and forth to therapy, always wearing bandages or a sleeve? Just... ugh. Frustration.

Today I'm annoyed at this sleeve and the lymphedema that forces me to wear it. But, I'll smile and grin anyway because being annoyed means that I am alive ... and that's something to be happy about.

I'm doubly frustrated because this sleeve is relatively new and its unraveling, which means that I need to order another one... sigh. Always more money to spend. Being a survivor is just not cheap nor easy.

Follow-up to my first 3-day master cleanse

Well, I finished my three days of the master cleanse,[trying-master-cleanse] and I have learned something about myself. First of all, I am full of it -- literally. (laughs)  Second, I LOVE to eat. Third, this is really a good thing to do for my body. Fourth and finally... three days just isn't long enough to really change habits and make long-term changes. But it is a good start.

The master cleanse is pretty simple, but that doesn't mean that it isn't difficult to do. I should have prepared myself to do this before I started but I jumped right in. I didn't want to chicken out, so I figured that I'd leap into the deep end of the pool and just paddle like crazy.

That isn't a very good plan.

I updated my statuses on facebook pretty frequently over the past few days with the various thoughts that passed through my mind as I cleansed. To sum them all up.... quitting eating cold turkey is hard and constantly going to the bathroom is gross.

I decided to only do three days because I have plans this weekend that include eating... and I did not want to change my plans or substitute another activity for eating. I just didn't want to do it. But I have decided that I will definitely do this cleanse again, and soon. And the next time, I will push for the entire 10 days.

I'm hungry right now. And I think that it will be a more difficult road than I imagined to give up processed foods, white flour, white sugar and red meat. It will be equally difficult to reduce my alcohol intake as well. But... I'm pressing on because I have to.

Sigh.

I'm not sure if its related but my lymphedema is acting up something serious. I'm a little freaked out about it. I hope that I can reverse it with some self-massage and a few exercises.

I swear, If it ain't one thing... its another.

I need a good cover story

I've been wearing these lymphedema bandages for a few weeks now. And I've gotten used to the way that they look. Sort of. They aren't sexy and they do not go very well with my wardrobe... but it doesn't bother me as much because my arm is really going down pretty well. I can see progress and it is making me happy.

My issue is that people I see on the street are amazed at the bandages. I am stopped constantly and asked.. "what happened to your arm?".

Sigh.

I suppose that it is startling to see a gorgeous lady (that would be me) strolling down the street like nothing is wrong with her arm bandaged up to the shoulder. A bit strange to see I'm sure. But it is my reality right now. Here's what's strange about the constant questions though... I simply don't feel like taking advantage of the obvious "teaching" moment.

Normally -- rather, for the past two years, I've taken every opportunity given to me (and forced more than a few) to educate people about breast cancer.  I have had what I call... "breast cancer Tourette's" for the longest time. Just could not help myself from responding to anything that opened the door for me to discuss my journey with breast cancer. But I don't feel like sharing all that right now with every stranger I see.

It is strange for me. I can see the genuine concern in their eyes... but it feels like a chore to say...

oh, I have lymphedema (which just means that my arm is swollen) because I had a mastectomy about a year ago... by the way I am a breast cancer survivor.... yes, at my age. no i don't have kids... yes, its a shame. okay bye.

Who DOES that on the street with strangers? Well, not ya girl. At least not for the past couple of weeks. (shrug) But you know... I have decided that I need a good cover story. Like, I was attacked by werewolves in the dark or something. And I need to practice it every day so that it rolls off my tongue easily.

Because I really will be wearing this sleeve of bandages for another 2 weeks I think. I just don't know what story to tell...

Ideas?

(as you can see, my arm is getting smaller... yay!)

Physical therapy is great

After my last debacle on the airplane trying to lift my baggage over my head to store it... I accepted that I needed some real help with this arm. (reason-number-6541835-why-i-hate-breast cancer)

I don't have a really good reason/excuse why I had not tried physical therapy before now -- other than I simply did not want to put one more thing on my already over-crowded schedule. But between the lyphedema (swelling) and the very limited range of motion with my left arm, I simply could not avoid the issue any longer. Not if I was trying to actually function well in this world. Since I do so many things alone -- purely a preference -- it was time for me to accept that I wasn't in the best of shape to be jetting around the country with one arm that was practically useless.

So... I dug around in that pit I call a bedroom... and found the sheet of recommended hospitals/lyphedema specialists that I was given at my breast care center and I made a choice. In actuality, my choice was pretty much random and not based on any research at all. I just trusted my gut and went on a limb. I chose Georgetown Hospital to be evaluated and treated for my lyphedema. (Honestly, I chose Georgetown because it was the closest to my job.) But, now that I've been there twice, I am very pleased with my choice.

First of all... my therapist is super nice. I don't know why this surprises me but it does. Her name is Jennifer and she's very knowledgeable about lyphedema and its treatment. A lot of her patients are breast cancer survivors.  That bit of knowledge alone put me at ease.  In the two visits that we've had, I've learned that my issue isn't severe (thank God) and that exercise and massage really do help.

One the one hand, I feel very silly walking my fingers up and down the wall -- that's one of my exercises -- but seeing how much it has actually helped keeps me from feeling like I'm wasting my time. The massage that she does to help move the lymphatic fluid back into my muscles as well as the work she does trying to relax my muscles that have tightened/shortened since my surgery is great. Its amazing what a little assistance can do to make your life better.

Once again, I am thoroughly grateful for great health insurance.

Jennifer mentioned to me that some of the muscles in my shoulder area are so tight, they feel like stone. How crazy is that? I've been walking around for a year, hitched up on one side -- trying to make things better/easier on myself and actually making things worse I think. But, like the saying goes... when you know better, you do better.

I still haven't totally gotten the hang of all my exercises yet. And truthfully, while they look so very simple and easy... my arm and shoulder do hurt a bit afterwards. But they work.

I'm travelling again. And this time, I lifted my computer bag into the overhead storage all by myself. It was still a little bit of a struggle but I definitely felt much better about my effort. So... I don't know how much Georgetown and Jennifer are charging my health insurance company for this work but I can honestly say its worth every penny.

Physical therapy is a beautiful thing.

Reason number 6541835... why I hate breast cancer

Oh my... what a weekend. I am on the move, travelling and whatnot. I have to go to the mid-west for a business meeting for work. But since no flights from my area fly directly to that city, I decided to stop in Atlanta for the weekend (the flight was going to come through Atlanta anyway). I wasn't looking forward to my flight to Atlanta because it was in the wee early morning hour on Saturday (not a great move for me). But I did what I had to do.

Beyond the fact that I was tired when I left my home to go the airport, and tired while I sat at the airport too long... and nearly missed my flight because the airline changed gates and somehow I missed that announcement... outside of all of that... I had hoped that getting on the plane would be relatively easy.

Um. No.

My left arm is wacky. There's no other way to put it. It is, what it is. Since the mastectomy included removing cancerous lymph nodes as well as my breast tissue, my poor arm just isn't the same. I was warned about that. (shaking my head) But I swear I just am sick of breast cancer dogging my life in these little ways.

My arm has been acting up a little bit, over the past few days/weeks. Which is cool. I am learning to deal with the minor issues. But I was a bit worried that flying between home, Atlanta and the mid-west, would aggravate my arm and make life a bit hellish. I had hoped that my worrying was in vain. But... of course it wasn't.

One of the reasons that I am angry (well maybe annoyed is a better word) about being on this side of the breast cancer journey is that people look at you and cannot SEE that you've been through hell. People look at you and just see, a regular ol' person. I suppose that is a good thing but sometimes it is a pain in the butt.

Case in point:  I always check my suitcase. I do not like the hassle of dragging around carry-on luggage. I check my luggage and I keep on going. But on this trip, even though I checked my luggage, I still had to lug around my laptop case. Because I ended up being one of the last to board the flight -- instead of one of the first -- I was frustrated squeezing down the aisle of the plane. (Side note: do the airlines just HATE their passengers or what? Grr... sick of feeling squeezed on planes.)

As I am coming close to my assigned seat, the flight attendant was standing sort of in my way blocking the aisle. Granted, it is very early in the morning and Nicole is not a morning person but I felt that she was a just a tad bit... abrasive for early in the day. Nonetheless, I responded to her bark about where my seat was located with a tight jaw and a smile. After my response seemed to make sense to her, I found myself standing far too close to her as she stood up to get out of my seating area and allow me to sit down.

Now, picture this. I am 5'9" tall and a bit thick (not fat, just not skinny). She is about the same height, also african-american and pretty solid herself. Not fat, just not skinny either. We are standing uber-close -- practically nose to nose because the aisle is just that tight. I am feeling agitated because I was boarding so late and its crowded. I am annoyed because most of the overhead storage space is taken -- the flight was packed -- and the flight attendants kept repeating the same mantra (basically, put your bag where ever you see an opening). So, I'm standing there with this http://greenhillgoldman.blogspot.comian chick blocking my seat and I look up to notice that there is actually space just above my seat for my laptop bag.

My left arm is tight. The lymphedema has been acting up and I'm already feeling the heaviness. Remember too that I can barely lift my left arm over my head... my range of motion has been shot to hell since the first surgery (aggravated by the reconstruction last fall). In other words, I am dreading the attempt to lift this heavy bag up and over my head to put it in the overhead bin.

When people cannot look at you and immediately see what "your" problem is, they naturally assume that you don't have one. I was standing close enough to this woman to kiss her (if I got down that way) and I said to her... "Would you please help me with my bag?" She asked me to repeat myself, as though she didn't hear me... so I said again... "would you help me with this?".

Do you know that this woman said "sure" and then proceeded to squeeze herself past me -- moving farther up the aisle from me -- and did NOT offer nor attempt to help me lift my bag into the storage bin.

Sigh. It took a lot of self-talk for me to articulate that simple sentence out loud. Asking for help is not something I do easily or well. But I knew that I would need help and I felt it was okay to ask for it. To be ignored, then to feel the eyes of lots of passengers on me as I struggled to lift my wheeled lap-top bag up from the floor to the top of the seat, and then to struggle to lift it from the top of the chair into the storage bin was really humilating.

I know I don't "look" like there's anything wrong with me. I know that people do not have to go out of their way to help me. But I find it particularly repulsive when I ask directly for help and am ignored and stranded. Who does that? Hears a request for help and then just walks on by?

After I get my bag into the storage container and sit down, its all I can do not to become upset and teary. I didn't ask for preferential treatment, just a little assistance. And that was too much to ask, I suppose. Just very annoying. I got through the flight, I pulled my own bag down from the storage bin just as awkwardly as I put it up there. But no pride of accomplishment was there.

Two days later, my arm is still swollen -- it started acting up while I was hanging out today -- and I have to been on a plane in a few hours. (which will only increase my discomfort because flying aggravates the lympedema) I am dreading getting on that flight, and dreading dealing with that laptop computer. I am worried that when I get off the plane, my arm will really be swollen and crazy looking. Its not looking too great for this arm.

I've been so pressed to get back to "normal" that I forgot what its like the normal world for peple are not at the top of their game. I am generally well-adjusted and cool with my current fate -- however, a little more compassion from people in the world would really help make my life just a tad bit smoother.

Where is the love? Do I have to revert back to my chemo-look? Bald head and sallow skin tone? In order to expect that people will take a few moments to look at and to address whatever problem or assistance I may have/need. I guess that its the way of the world today.

Feeling the financial crunch of being ill

I'm still at home recuperating from my major surgery the other week. It is so amazing that I went through 12 and half hours of surgery where pieces of my body where removed and then placed in other places....and then all of the blood vessels were micro-surgically stitched back together. It is AMAZING to know that I made it through all of that. I am in awe of the skills of my surgical team. Even though I was a bit of a problem patient for them I think -- not from a health issue but I wasn't emotionally connected and I wasn't reall hyped about the whole event. And that funky attitude really made a different in how I responded to the requests to do things while I was in the hospital.

But eventually I got my head n the game and did what I needed to do to get out of that hospital and back into my own home. Since being home, I have done some of the things I'm supposed to do. I do get my rest. I am not getting my walking which, starting tomorrow will change. I do try to eat and drink -- but I know I'm falling short on that too. My appetite is still pretty weak.

In an ideal world, I'd love to go and have dinner at one of my favorite restaurants in town, maybe have some drinks or coffee with friends and just laugh and enjoy myself. But, I can't see it happening right now. The bills of my life seem to come whether I have money to pay them or not. So, I have to stretch my money to cover this and that... and hope that there will be enough to pay for other things.

I want to do things like travel, buy a car, maybe buy a condo...but I am not sure how to work that plan based upon what I'm earning right now and what I have in the bank. Next year presents me with issues of more surgical procedures -- mostly out patient procedures, except for one. Each surgery means downtime and some additional costs that I'm not sure how I will pay. But I will pay.

The costs of being ill are high. Beyond the medical bills from the hospital, the doctors and the prescriptions. There's the additional costs of travelling to/from the doctors & hospitals, the costs of the medical tools and supplements that are needed -- like gauze, sponges, bandages, etc.

My appetite is really low... so low that I think I will be going back to drinking Ensure to make sure that I am getting enough nutrients and protein necessary for my healing. But that's again, an additional cost. And so forth.

I am dreaming of the day I can go back to work. I'm hoping that its very soon but I don't know when it will be exactly. When I go back to work, I will need more things to help me with that transition as well. Clothes, under garments that fit properly with support but without chafing, or rubbing. I have no idea where to find what I think I need.

I also have to be fitted for a compression sleeve for my arm to control my lymphedema. It was doing really well when I got home from the hospital but it seems to be puffing up again and I have to also find a physical therapist who can help me deal with this.

I will be searching for a budget program that will help me to figure out how I can stay on top of all these bills and expenses. I am confident that there is an answer out there. As soon as I find it, I will share it with you. If you know of anything that may help, please let me know.

...and help me find a way to let my family know that I'm not a Scrooge but gifts are going to be really minimal this year. The love is there, the money is not.

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.