Kicking cancer's ass - day 1877

Yesterday I posted 10 things I wish everyone knew about lymphedema.  How much of it did you know?
Today I would like to share 10 ways my loved ones can help and support me (or anyone dealing with lymphedema).

1. Lymphedema is very overwhelming to me.  My automatic response to anything is to over-research whatever it is.... so I understand a lot about this disease.  That doesn't make it easier to deal with the realities of living with it.  So if I downplay it, I'm not making light of my condition.  I'm trying to make you - and me - feel better about it.
2. My arm is painful sometimes and uncomfortable all of the time.  Often the simple, everyday things are more difficult for me.  Drying my hair, washing dishes, typing, even driving.  I can still do most things.... but it takes more time and effort on my part.  You know how it's more difficult for an overweight person to do things because they are carrying a lot more weight?  It's the same concept.... it's more difficult for me to do certain things because my arm is often sore and it's heavier than the other (especially when it's wrapped!).
3. Could I stand to lose a few (or thirty) pounds?  Sure.  Would that help my lymphedema?  Not really.  My left arm is significantly larger than my right.... but it's not fat that will go away with diet or exercise.  In fact I have to be careful with what exercises I do so I don't aggravate it.
4. Lymphedema has made me VERY self-conscious of my arm.  I do not wear sleeveless shirts.  I don't even like most short-sleeve shirts.  I have to wear loose-fitting long sleeve shirts so the sleeve isn't too tight.  I can't wear my wedding rings on my left hand.  I can't even see my knuckles on that hand.  Wearing compression garments hides the puffiness, but the bandages make it obvious something is wrong with my arm.
5. Wearing compression garments for lymphedema is exhausting.  Have you ever tried to pull on spanx?  Try that on your arm (wrist to shoulder) and then a skin-tight glove.  And that's the easy way out.  Full compression involves a stockingette, wrapping a layer of cotton around my arm, then four different ace bandages.  If I don't wear my glove, then I also have to add in long rolls of gauze that wrap around my fingers.  Wrapping takes forever.  Unwrapping isn't much better, and then I have to roll everything back up so it'll be ready for the next use.  
6. Right now I'm going through a low period because of my lympedema.  I'm just SICK OF IT.  Most of the time I can shrug it off.... I mean, I can't change it and complaining doesn't make it better, right?  But sometimes it is just.... difficult.
7. My "off the rack" compression sleeves cost $80 each.  I have two of them.
   My "off the rack" glove cost $125.
   My custom sleeve and glove (which are supposedly better) cost over $300 - after insurance.
   Those garments are supposed to be replaced every six months.
   My Flexitouch pump is costing me $36 a month for three years - after insurance.
   The supplies for bandaging - cotton padding, stockinettes, gauze, ace bandages, tape.... all of that is out of pocket for me.
8. That might sound ridiculous to you, but it's true.  It takes me 15-20 minutes to wrap my arm in the morning.  It takes about that to unwrap, and then roll up the bandages.  If I use my pump, that takes an hour every day.  All of this doesn't include the exercises and self-massage that I am supposed to be doing to help manually move the lymphatic fluid.  
9. I wouldn't say that dealing with lymphedema instills the fear of recurrence.  The thought of breast cancer returning is never far from my mind.  I do often feel guilty complaining about dealing with lymphedema when others have it worse, and considering I have faced much worse.  But it is what it is.
10. My story isn't unusual.  The more lymph nodes removed, the greater the risk of lymphedema.  I had 24 nodes removed, so it's not a surprise that this happened.  What's unlikely is that it didn't show up until several YEARS after my surgery.

I'm having surgery in a few months which will hopefully improve my lymphedema.  It's not a cure, but I hope it helps.  The surgery isn't very intrusive, but the recovery doesn't sound very fun.

In the meantime, I need to do better about bandaging my arm.  That works much better to reduce the swelling than simply wearing my sleeve and glove.  But it's a pain, and very time-consuming, and I'm lazy!

I need to get back to using my pump every night.  It's a hassle, but it helps and I'm paying for it regardless, so I might as well!

Now you know some of the reality of my every day life with lymphedema.  

I didn't post all of this to get sympathy.  I know it could be worse.  Others DO have it worse.  In the grand scheme of things, lymphedema is annoying, uncomfortable, expensive and frustrating... but not scary or life-threatening.  Once my pity party is over, I'll put my big girl panties on and carry on!  

Kicking cancer's ass - day 1876

I know I'm starting to sound like a broken record, writing about lymphedema, but that's the thing with a chronic disease.... it doesn't ever go away.  The swelling is always there, my arm never feels "normal", and wearing compression garments is a necessity every day.

If you only knew how uncomfortable it is...
If you only knew how self-conscious it makes me...
If you only knew how frustrating it is...
If you only knew how expensive it is to manage...
If you only knew how many times I am asked "what's wrong with your arm?"...

I belong to a lymphedema support group on Facebook and I'm going to share part of a post that echoes how I feel on a daily basis:

Okay what motivates you to keep going and never give up. Some days I’m good. Other days I am just so flippin’ tired of this. I don’t have the energy to pump and massage and dry brush and lotion and wrap and it’s just too much!!! Feeling very defeated this week! I am in pain 24/7. 

My family is supportive but no one completely understands the challenges/struggles both mentally and physically (except all of you). Ugh! Gotta get out of this funk...

I had never even heard of lymphedema until my BFF developed it after one of her surgeries.  Most people who ask me about my arm have never heard of it, and I get a blank look when I try to explain.  I've resorted to giving a simplified answer such as "I had surgery and now my arm swells".    My compression garments are supposed to be worn every single day.  I should be bandaging (which involves layers of padding and ace bandages), but most of the time I just wear my sleeve and glove.  Those are supposed be replaced every 4-6 months.  My custom garments cost over $300.  The pump that I have was over $900 (after insurance).  I don't use it every day like I'm supposed to because a) it's a hassle putting it on and taking it off and b) it takes an HOUR to go through the entire programmed cycle.  There is exactly ONE lymphedema specialist in Abilene.

I found a web site that posted these "10 things I wish people knew" about lymphedema.  These are exactly the things I wish everyone knew about lymphedema.   It's not life-threatening and the stage of my lymphedema is not as severe as others.....but it *is* a struggle every single day.  

Lymphedema takes a toll.... physically, emotionally, financially.  There is no cure, so the best I can do is try to manage it and hope it doesn't get worse.  Making the best of it gets old sometimes.

Kicking cancer's ass - day 1870

 

 October 15, 2001..... seventeen years ago today I married my best friend.  It was just me and him at the courthouse.... no fancy dress, no flowers, not even a photo.  Hubby and I have proved that the marriage is so much more important than the wedding.  💗

As with all couples, we have seen our share of ups and downs.  We've celebrated births and we've comforted each other through losses.  In sickness and in health, in good times and bad, through it all, my husband has been my biggest supporter, my shoulder to cry on, the one who makes me laugh (and the one who picks on me!)....the one constant in a life that is forever changing.

We may not be perfect, but we are perfect for each other.
Thank you for loving me no matter what.

Happy 17th Anniversary.  I love you.  💑

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October 15 is National Pregnancy and Infant Loss Remembrance Day.
(http://www.october15th.com/)

I don't talk about it a lot, but way before breast cancer, I was a statistic.  I was 1 in 4.

Both of my children are what they call "rainbow babies"..... babies conceived after a loss.  One month after my first miscarriage I became pregnant with J.  Six months after my second miscarriage I became pregnant with K.  I can't imagine life without the two greatest joys in my world, but there's a part of my heart that will always hurt for the two babies who never got to be.

If you are 1 in 4.... I feel your pain.  I've been there, I never wanted to be there, but there is hope after loss.










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October 15 is also a special day for another reason...... it's Allyson Hendrickson's birthday!
Allyson has been in heaven for four years, but she is never far from my thoughts.
Allyson, on top of celebrating my love for my husband, today I celebrate you.  You came into my life when I was desperate for a "mommy" friend, and you stayed through the worst time I could ever imagine.  You made me laugh, you made life fun, and my world is not the same without you in it.

Happy Birthday in heaven, my friend.   You were one in a million.

Kicking cancer's ass - day 1859

That moment when you are exhausted and you have a headache, so you start to head to bed earlier than normal.... and then restless legs kick in.

So since I'm up... and I'm annoyed, let's do some insomniac blogging. 

I took on a new role this week:  tennis mom.  Yes, I said tennis.

I don't know if I mentioned, but my daughter, who had never touched a tennis racket before P.E. last year, was placed in 7th grade competitive tennis.  As in.... they COMPETE.  You see, most beginners are placed in the beginner tennis class.  But that would be too easy.  My daughter aced her band audition last spring and made symphonic band for junior high.... which just so happens to be the same class period as beginner tennis.  Hence the competitive tennis thing.

You know what?  My daughter can compete!  I know they are placed against opponents with similar ability (or lack thereof), but still.  I've never watched a junior high tennis match, so I didn't really know what to expect, but I did not expect my beginner to take home second place in her very first competition!

Wimbledon it is not.... but maybe she found another sport that she'll enjoy.  

I do have to say that after years and years of being a softball mom, the tennis thing is a whole new ball game (pun intended).  

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My kids are smart.  Tomorrow marks the end of the first six weeks.  J's lowest grade is a 93 in US history (which was an 83 three weeks ago!).  K's lowest grade is a 90 in language arts.  They must take after their mom!  Jazz band, marching band, robotics team, destination imagination, softball and now tennis..... smart and well-rounded.  They make me proud.

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I have always loved to read, and ever since I was a teenager my genre of choice was romance.  Mock me if you will, but romance books give me all the feels..... AND a happy ending that's often missing in real life.  I am absolutely thrilled that two of my favorite series (Julia Quinn's Bridgertons and Robyn Carr's Virgin River) are being brought to the small screen.  I know it'll probably be like when a book makes it to the big screen:  the movie rarely lives up to the book.  But still.... after years of watching "who done it" crime shows with my hubby, I'm looking forward to some chick shows!

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I may have a slight addiction to stainless steel tumblers.  We probably have ten of them.  But I never ever go anywhere without a drink, and most of the time here in Texas a drink will stay cold for all of ten minutes.  My Yeti keeps my peach tea ice cold all day!  I've recently expanded this addiction to include stainless steel straws.  I was using silicone straws (to do my part in saving the ocean from plastic straws)... but then a friend introduced me to stainless steel drinking straws.  Oh.Em.Geeeeeeeeee.    You just thought a drink stayed cold in a Yeti.  Take a drink through one of those suckers and it is ICE COLD all the way to your mouth.  Yum.

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All of K's friends have been asked to Homecoming, but she hasn't.  In fact, the boy she likes asked one of her friends.  I can't tell if she's really not bothered by it, or if she's just being a good friend by supporting one of her besties.  Maybe it runs in the family.  This week is the Fall Dance for high school students, and my son and his group of band buddies are going to someone's house for a movie night instead.  I don't mind... he's hanging out with good kids.  I just wish he'd get a girlfriend so he maybe would care a little about getting a haircut or making sure his clothes match.  Ha! 

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K has a softball tournament this weekend and I'm very excited for it.  I always look forward to a weekend of watching my girl do her thing on the diamond..... but this weekend is MY tournament.  It is the seventh annual Hope for a Cure in honor of breast cancer awareness month.  Not only can I not wait to see my beloved Lady Diamonds play, but I am looking forward to seeing all of the teams in pink.  And it is very meaningful to be able to hand out the awards and thank them for coming out to play for a good cause.... MY cause.

Go Diamonds!

Kicking cancer's ass - day 1857

If you Google "lymphedema" and "fatigue" you might just be surprised at the results.

Many sites list the same information.... the same symptoms, the same treatments.  Lymphedema is not curable, but it IS treatable.  But who knew that this condition can sap your energy and make you feel as if you've run a marathon??

From the Medical News Journal:

Lymphedema symptoms include:

• swelling of either a part or the whole leg or arm, including the fingers or toes, ranging from slight changes in limb size to severe swelling
  (My arm from below my shoulder all the way to my fingertips is swollen)
• difficulty wearing jewelry or watches or fitting into clothes or shoes
  (I wear a silicone wedding band on my left hand.... that's the only jewelry I can wear on that hand.  Shirt sleeves are noticeably tighter on that arm.)
• swelling in the head or neck
  (Thankfully I do not have this)
• a heavy or tight feeling in the arms or legs
  (Yes yes yes yes YES! ) 
• the range of motion of the limb is restricted
  (Between my mastectomy, radiation and now lymphedema, the range of motion of my left arm is atrocious.)
• discomfort or aching in the affected limb
  (Aside from being self-conscious and so tired all the time, this is my biggest complaint.  My arm just ACHES.  It hurts when I wrap it.  It hurts when I don't.)
• recurring skin infections
  (This is a serious complication with lymphedema.  Anything can cause it.... a paper cut, a mosquito bite, a scratch.... I have to be hyper-vigilant about the skin health on my left arm)
• severe fatigue
  (I know it doesn't seem logical, but I believe this 100%.  I have insomnia and restless legs, which I know contribute to my fatigue, but I believe a big part of my depleted energy is because of the lymphedema)

As always, I could have it much worse.  While this is annoying and uncomfortable, there are more serious things I could be dealing with.  There are people dealing with much more serious cases of lymphedema!  Go ahead and Google lymphedema and then look at images.  I dare you. 

You will see people with limbs more than twice their normal size.  You'll see purple skin, skin infections, weeping wounds..... people who have it way worse than I do.  There's a chance that surgery could help me see some improvement. 

Too bad my surgery is still over three months away.  Three more months of dents in my skin, fat fingers, aching arm, compression sleeves and bandages.  And those things are expensive!!

I thought I was just old, menopausal and lazy.  Good to know that my lymphedema could be seriously contributing to my chronic fatigue.  Unfortunately having an answer doesn't automatically provide a solution!

Kicking cancer's ass - day 1856

It's PINKTOBER!

I wrote this last October 1st, and it's still how I feel about Breast Cancer Awareness Month.  

In case you've been living under a rock, October is Breast Cancer Awareness month.  That means you will be inundated with ads online and on tv for anything and everything pink.  People will start those stupid chain messages on Facebook about a "no bra day" to support the cause.  People will tell you to "save second base".  You'll have the opportunity to buy pink shirts, socks, shoes, pens, jewelry, rubbermaid containers, hammers, etc.  You name it, someone has jumped on the pink ribbon bandwagon for it.

Most of my breast cancer survivor friends have a hate/hate relationship with this month, and the color pink.  It's true that most of the hype does NOT raise any money for breast cancer care or research.  There are a ton of articles and web sites about how little profit from pink ribbon sales actually goes to the cause.  Most of it is just that.... profit.  Only a very small percentage, if any, of pink ribbon merchandise sales actually goes towards anything related to breast cancer.  So basically it's just people and businesses capitalizing on breast cancer.

That's the negative.  I don't blame my friends for feeling that way, and I don't agree with anyone wanting to make a profit on something that tried to kill me.

However..... I don't mind Pinktober.  I don't mind pink ribbon items.  I love pink!

Having breast cancer changed my life.  While it doesn't define me, it has changed the way I look, the way I feel, and the way I view things.  And the way I view this whole pink ribbon campaign is this:  if you know me, or someone else, who has been affected by breast cancer, and you choose to wear a shirt with a pink ribbon on it, or buy pink trash bags, or put a pink ribbon magnet on your car, I don't think you are "giving in" to the hype.  In my opinion, by doing any of those things, you are showing your support for me (or whoever) and the fact that I'm a survivor of this horrible disease.

While Hefty may donate little or no profit from the sale of pink trash bags, the fact that you bought them with ME in mind means that the whole gimmick worked.  Your purchase of those trash bags will not provide a cure for cancer..... but it does show support.  And one of the most important weapons in a cancer patient's arsenal is support.

(To be clear, I have no clue if Hefty sells pink trash bags.... that's just an example I made up because let's face it, you can buy everything from pens to scarves to boots with pink ribbons on them!)