Dear Karla: You Guys Encourge Her, Okay?

Hello, Megan :-)

I was just asking Mr. Google a question this morning about chemo cough and lo and behold I find your journal blogging about breast cancer and chemo cough with dripping nose, which I now have both. I have one more chemo  next Friday that I'm kind of dreading because of the cumulative side effects and looking forward to getting past.    Anyway, I just wanted to drop you a note and say thank you for sharing. It's also very nice to hear that you're now doing well cancer free.   I also am a court reporter.  I haven't been working since I got my diagnosis in March due to my surgeries and chemo now.   I'm a little concerned they may want me to also do radiation  which I've almost decided for sure I'm going to decline due to other medical complications that could arise later.   Anyway kudos to you.   This breast cancer journey is definitely not for sissies. It does give new perspective to my life as well.  

Best regards

 

My husband and I were on a much needed and scared-to-death-it-wouldn't-even-happen vacation recently when I received this surprise e-mail (above) as a comment to one of my long-ago journal posts.  I do not personally know this precious lady but I do know that once upon a time -- a horrible, horrible time -- I walked in her shoes.  I know exactly what it feels like to tramp that hazy, crazy, dimly lit path called:  I have to take chemo and possibly go through radiation and for sure I have to take a chemo "pill" for the next five years that has all sorts of side effects (which, I have come to find out, are not so bad after all).  I also realized that because I have not updated my journal in such a long, long time that perhaps I should.  People who might happen across it might find new hope in the fact that I did survive.  They might find that there is a wider, brighter path once you get out of that scary chemo/radiation forest.  You DO get your hair back -- and eventually you get your actual hair, not the chemo curly hair that springs forth first.  You DO stop coughing, Karla.  You laugh.  You move on.  Your life resumes. You alllll-most forget that you even had to go through this awfulness at all (until you see that chest scar in the mirror every morning, HA!)

And then you get a phone call or an e-mail from a friend or even a stranger and they will say -- breast cancer, oh my God! I am scared to death.  I heard you went through this.  Can you please tell me what to expect?  What will happen to me?  And immediately you summon all your positive words, you find that you have all the time in the world to talk to this person, talk them through it.  Offer them any kind of hope that they can cling to because you know, you know exactly how terrifying it felt to get that diagnosis. How you knew in an instant that as soon as the doctor said, "you have breast cancer" your life would be forever changed, and it was.  

You also remember all the people who tossed you a lifeline.  Many you didn't even know -- complete strangers who offered you a single sentence of hope -- you will get through this and be fine.  There is so much help offered through the American Cancer Society these days, check their website message board -- people are always posting suggestions.  

A lady at my breast surgeon's office, a volunteer, a 30 year survivor, visited with me for a long time and told me how bad her breast cancer was back in the 70s and how rough it had been for her when doctors were still experimenting with treatments.  But she made it and she was there to tell me that I was going to live to be an old woman, of that she was confident.  And you know what? She was so positive and upbeat that I believed her.  She told me to be  cheerful and wear bright colors, wear make up, do anything to cheer by own self up -- stay positive.  That was hard to do sometimes.  It's easier to do when you have a "friend" to count on.  I was lucky.  I had lots of friends that cheered me on and sat beside me when I took my chemo, my children who called and sent me gifts and then I had my greatest support -- my husband, Dwain. 

Anyway, I want Karla to know that she WILL wack her way through the chemo/radiation jungle.  At the time that I was going through this awfulness I felt so alone with my thoughts of gloom and doom -- and you do feel this way every so often --  you just do feel sorry for yourself sometimes.  That's okay.  Just know that when you reach out and let someone know what you are thinking and how you feel, there will be a lifeline of hundreds of thousands of women who understand what you are going through and will gladly offer any help they can think of.  And as this volunteer that I spoke of early told me, once you are finished healing and all is well, it will be your awesome opportunity to be there to offer a voice, or throw a lifeline to the next person who happens to seek you out.  This type if service will not only be expected of you, it will be your duty as a survivor.  

And Karla, you will survive.   

-Megan-

PS:  I will try to do better and update my journal more often.  It's important to share and to let people know how life does go on on the other side of breast cancer. 

FAKES

Today I think I shall talk about fakes. Not that fakes are a such bad thing.  In fact, if you will flip your brain a little bit and adjust your way of thinking, you will come to realize that fakes can be a really, really good thing.

Before mastectomy, I never thought much about the positive side of fakes -- fake personalities; people trying to be who they clearly were not, that is what a fake was to me.  But used correctly, fakes can be worn to your advantage; make you feel like a million bucks.  They can give a recovering cancer patient (like me) an entirely new outlook.

Here is what makes me such a delightful fake.

Breast Forms (see former post):  Which can be purchased in every size, shape, and form. Made to fit nearly every person, regardless of circumstance. The nice thing for people (like me) who choose NOT to have breast reconstruction, you can be any size you want on any given day -- Twiggy today, Marilyn Monroe tomorrow. The advantage to breast reconstruction is, of course, you do have cleavage and you can wear a regular bra.  The forms inside your skin, though, are as fake as the ones I wear outside.  Either way you go, they will be fake.  Not a Hollywood Boob Job glamorous type fake (that would be nice, wouldn't it?) but at least it's an option women have nowadays, thank God!  

Wigs:  You know, I used to think that wigs were the tackiest things on earth.  Honestly, I felt so sorry for women who, for whatever reason, "had" to resort to wearing them.  They looked like wigs.  Stiff, heavy, hot and unyielding as a statue.  Either that or they looked like costume hair -- the kind you wear on Halloween or to a crazy clown party. The next misconception was that good wigs would cost way too much or they had to be made from real human hair.  Guess what?  I was wrong on all points.

The American Cancer Society, once again, comes to the rescue.  They sell the most amazing synthetic, affordable wigs in the TLC catalog.  They have styles to fit every ethnic group, every type of hair style, every hair color, even highlighted hair.  They have hair that swings in the wind, that you can style and brush and part wherever you want to part it.  They have curly hair, straight hair, short hair, long hair, Farrah Fawcett type hair, pixie cuts and page-boys. 

One lady said she purchased five wigs and has loved every single one.  You know, I can understand.  And you don't have to have gone through chemo to need a wig either.  Some women just plain have very thin hair -- thin to the point of bald. The nice thing about a wig is that you simply never, ever have a bad hair day. Never. I do not have any idea who design, cut and color the wigs for the American Cancer Society, but they are truly amazing. The ones that come with highlights are like something you would paid a high-end hairdresser a ton of money to do. 

It's really funny, but when I took chemo many people never even knew I wore a wig at all.  Never.  Not even my own doctor who was concerned that I had not lost my hair (if you take the type of chemo I was taking and don't lose you hair, it means it's not working). I had to lift my wig off to prove to him that I had.

Of course I am thrilled that my own hair is growing back.  My breast surgeon said what is coming in now is called Chemo Curl -- very tight little screwed up ringlets. No matter what I do, I can't make my hair straighten out even a little bit. Evidently it will take approximately two years for my real hair to come back in normally. So, thank goodness for the many varieties of wigs.  Only the people who know me well are even aware that I am on my second wig.  And I love that I never have to experience a bad hair day.  And that it only takes me about three minutes to fix my hair.  And that I only have to gently wash my wig about every two weeks.

Anyway, that is my fake post.  Yet I know that there are so many delightful fakes out there waiting to be discovered. Suggestions or anyone?

Mastectomy Bras and Breast Forms

This is my husband Dwain and me -- posing at a regular tourist stop in the fall, mainly because of the incredible beauty of the sugar maple trees.  But this is also where most of our family, friends and dear loved ones are buried -- Maplewood Cemetery. 

I could not start this blog without a couple of updated photos, now could I?  I mean, it's been, what?  nearly 4 months since I last wrote.  I won't make excuses.  Let's just say, I've been having so much summer fun that writing was probably the last thing on my mind.  Actually I'm glad I waited because I believe the last thing that I said was that I would write about mastectomy bras and breast forms. HA! And I thought I knew so much in June.  NOT!  

And by the way, for those of you who may be new to this blog, let me give a very brief back history.  I had a double mastectomy last November with no reconstruction.  I don't intend to have reconstruction.  That is not everyone's choice, but it was my choice.  My take on it is that I can be any size I want, any day of the week, AND I'm just plain skiddish when it comes to pain, infections and abscesses, and I don't like surgeries that last 14 to 20 hours. I'll just leave it at that.  Breast reconstruction is not for everyone. 

Anyway, the breast form lady, Kim, who fitted me said that in her opinion my breast surgeon, Dr. Dana Abraham, was a most skilled artist/surgeon, and she's seen a considerable number of mastectomy scars.  She said mine was so thin and perfectly straight.  For a mastectomy patient, that is such a lovely thing to hear.  I mean, it's not like we women go around looking at each other's bare chests, comparing scars -- although we do talk about whether or not we liked our surgeons.  Of course, I adored mine.  The second thing Kim told me was that although my insurance company would pay for six mastectomy bras a year, that I should pick maybe three now (this was last winter) and get three more later because oftentimes our weight fluctuates due to chemotherapy or other medications.  She also said, I might want to wait to get the other three because plain and simple, the first three might just feel worn out by the end of summer.  

What ended up happening was that by the end of June, my breast forms were not fitting properly in any of my bras, especially in my little camisole bra.  I wore that thing one day to work, and by the way, it was a l-o-n-g day, my chest hurt because the breast forms kept slipping up and down.  Here is an example of what my (heavy) breast forms looked like: 

The next morning my chest was red, covered with blister-like things.  Plain and simple, the forms were too heavy for that particular bra. They would also sort of slip under my arms when I wore a regular mastectomy bra. Dwain solved the problem by looking in the TLC catalog (that's the catalog put out by the American Cancer Society that sells everything you could possibly need if you have cancer -- amazing wigs, adorable/affordable hats & scarves, soft soothing items, and it's especially nice for women who have breast cancer) and finding some very lightweight breast forms that look like this:

These are filled with micro-beads and are so light you almost would not know they were there.  They are absolutely perfect for hot weather and to stick into a camisole. 

And I wore these every day for a couple of months, especially during the hottest months of the summer. I liked them so much that Dwain bought me another pair in a larger size, because guess what? a larger size isn't any heavier.  I love that we can do that -- change size.  HA!  The down side to these is that they are sort of like a bean bag -- they sometimes mash and flatten, depending on what you are wearing, causing your bust to look smaller -- sort of formless, if you will.  Then came the new breast form, also from the TLC catalog:

These are called lightweight silicone breast forms.  Unlike the micro bead forms, these are extremely sturdy, easy to slip into the bra pockets and they hold their shape perfectly. The key word here is light weight.

Dwain suggested that maybe it was time for me to visit Kim again, that perhaps my older mastectomy bras were not fitting properly.  I had to admit, I wasn't wearing any of them very much, preferring instead to wear the two free "training" bras I received from the American Cancer Society because they (a) fit (b) were comfortable (c) my new breast forms fit inside the pockets without slipping and sliding around.  

Kim took out her measuring tape.  "You've lost weight.  A lot of weight.  You're definitely going to need smaller bras, and probably a new set of breast forms.  I will see what you insurance company says about that." Kim told me that it was no wonder that my breast forms had been slipping and sliding around.  She said that I should have come to see her long ago, that she could have helped me.  I had no idea that it had to do with weight.  

Anyway, I came away with three new, very pretty, bras, a cup and two bra sizes smaller. Here is what they basically look like (and that is NOT me modeling the bras). 

Pink Lace Bra

I love this bra because it gives me the opportunity to wear a low-cut top. The down side of not having real boobs is that I no longer have any cleavage.  But I do have lace, right? 

AHHH!  And then there is the t-shirt bra -- all smooth lines.  Just sooo sporty and perfect for my I'm-not-working-today clothing style. 

Although my insurance company will not allow me to have a new set of breast forms this year, I am approved for a new set in January.  Hey, I can live with that. 

Toss That Wig

This (before haircut -- whatdoyathink?) photo was taken in early June when Dwain and I traveled to Salt Lake City to visit our daughter Jayme and our three grandsons, David, Mark and Gabe.  Those snow-capped mountains behind me are the Wasatch range that totally surround Salt Lake City in every direction. 

Dwain is the one who suggested that I needed to get my hair cut.  It's hard to believe.  I actually thought Amy, my hairdresser, would laugh -- not exactly laugh AT me but with me when I wandered into her little styling booth.  She didn't even blink.  "Of course you have something to work with," she announced with her usual perky smile as she seated me in the little stylist chair that folds back into the sink to wash my hair.  "We will just give it some shape this time.  Next time... well, we'll see. Maybe we can even apply some fun color."  She and I both laughed when she insisted on charging me for a little boys cut. 

Relay for Life.  Walk of Survivors and their supporters/caregivers.  Believe it or not, I am in that group, second row behind the sign, wearing a pink t-shirt, dark shorts and a pink ball cap that previously belonged to my dear cousin Mary Spiece.  It reads: "Cancer Sucks"  Mary has been a breast cancer survivor for over 15 years.  She said she thought I needed the cap.  Thank you Mary!  I love it!.  My pink shirt is a Girly-Girl brand shirt that says, "Save the Hoo-Haws"  

Check out the temperature reading in the background. Ninety-two degrees. Whew!  That's one of several reasons I simply don't want to wear my wig any longer -- my head gets really hot under there.  Good ol' wig.  I'll always love you.  But I hope I never need to seriously wear you ever again, unless it's for fun.  That's one reason I wanted to get my hair shaped up.  I'm just ready to be me again.  That along with several people who have encouraged me to just shed the wig already.  Even my own oncologist told me, You don't need that wig.  You look just fine now.  Hey, he's my doctor.  If you can't believe your doctor.... right?  

The ever-smiling lady in the middle is my sister-in-law, Carolyn (Dwain's sister).  She sponsored me in the Relay for Life as a caregiver and purchased a luminary in my name. The gentleman next to her is Virgil (96 years).  God Bless him, his wife died from cancer last August.  The gentleman in the orange t-shirt was about to drive Carolyn and Virgil around the track to look at the luminaries -- especially the ones with the names of their spouses on them:  Audrice and Chuck

Carolyn's husband was diagnosed with lung cancer about the same time that I was diagnosed with breast cancer.  So that meant that Carolyn and Dwain, brother and sister, were both caregivers for spouses with cancer.  ~sigh~  Sadly, Chuck died just days before his birthday in May.  This was a very emotional walk for me as I saw luminary after luminary with names glowing, names I recognized; survivors of cancer, or in memory of someone who fought hard.  I had no idea that that walk would hit me so darn hard emotionally.

Dwain and I standing on the track with hundreds of luminaries glowing all around us.  Near the top of the bleachers was the word HOPE spelled out in gigantic bright letters (can't see it in this photo).   Hey,  and you can actually see my funny t-shirt and glow-worm necklace, lol!

  Anyway, my wonderful husband, who is a super good writer, did a blog about this whole Relay for Life.  In fact, he has a great blog that you can link to from my site. He writes about such interesting subjects and takes super pictures. I'm his biggest fan, so don't even try... hahahahaha.   In fact, he took all of the pictures I posted today.  You can link to his blog right now by pressing here. 


Now, I'm off to have lunch in a public restaurant with my husband -- without my wig.  Tomorrow I will have to discuss some problems I am having with my mastectomy bras.

-Megan-

Dear Diary - Story of a lock-box auction

I was reading a story the other day about a strange type of auction; one in which you bid for the mysterious contents of unclaimed bank lock-boxes.  Can you imagine?  What I can't imagine is that people have bank lock-boxes that go unclaimed by their family for such a long time that the bank eventually auctions them off.  I'd be intrigued at the thought of attending such an auction and at the same time left feeling a little bit sad at the thought.  After all, the possessions in these lock boxes would have to have been treasures to the owners, wouldn't they?  

Anyway, one of the things that intrigued me was that this particular lady said the lock-box that she won contained an old diary, which she read from beginning to end. Here before her were the thoughts and deep feelings of someone she did not know before, but it did give her some insight into the person who had once rented this lock-box.  How neat is that? 

When I was in about the fifth grade, I stumbled upon a little diary for sale at Sims Drug Store.  I had never wanted anything so much.  I don't remember how much it cost, but I remember dropping hints that I would really like to have one as a gift.  Evidently no one felt that I needed a diary.  So a diary was what I bought for everyone else -- birthdays, Christmas, whatever.  Suddenly they became all the rage.  All my friends talked about how they wrote every day in their diary or how they (uh-oh) forgot to write in their diary, how they carefully locked them with that special little key, where they hid them so their parents would not find them (that was absolutely vital).    All I felt was left out of something so big and important that was taking place all around me.  Everyone was recording their lives, I imagined, like Anne Frank did when she was hiding from the Nazis.  Someday their diaries might be  "discovered" and they would be famous.  And poor me, I didn't even have a diary.  No one cared.  No one would gift poor Megan a diary.  

This diary would have been perfect!  In fact, the one I wanted looked a great deal like this one.

The thing I never realized, I guess, was that I could just purchase one for myself.  It was as if, for some reason, you had to be given one.  And it never occurred to me to maybe just get a notebook and write in it.  I guess I just wanted what was popular at the time, which was a store-bought diary that came with a little key.  The little key was really important. 

Nancy Drew!  Oh man, I loved her.  I never saw this type of diary in any store where I lived.  I'd have been on my knees begging... please, oh please.  Christmas present.  Christmas present. 

The thing about young girls is that they write without editing themselves.  In a diary they can express what they feel without guilt or rejection or judgment by anyone other than themselves. The pages of a diary feel safe -- like telling God your innermost secrets, hopes and wishes.  That lock and key is what it's all about -- oh, plus the hiding place.  

After my mother died, I found a diary she kept when she was about twelve.  She wrote the whole thing in pencil.  I will give her this, she was diligent.  It had a definite beginning spot and ending spot -- and a purpose.  She wrote in it every single day, and she wrote in first person, present tense -- as if whatever was happening was happening right at that very moment (and of course, for her, it was).  It was about 1935, and her extended family took on a long vacation from Beaumont, Texas to Arizona to Colorado.  That was a pretty amazing trip for a family just coming out of the depression.  And it's all recorded from her point of view -- what they ate (sometimes warm milk and bread  for supper) and when (late at night, beside a campfire, under the stars), how they slept (in tents), who all went (uncles, aunts, parents and siblings), where they rode in the car,  how she felt when her parents embarrassed her and shocking prejudices. It was insightful and delightful to me, her daughter, who only saw this woman has a mother and a grown up until I read her diary. 

These days I wonder how many people still keep a personal diary that is not computerized?  

Recently, in court, we had a woman who was on the witness stand whose brain loops did not follow a natural course, if you get my drift.  She presented the judge with notebook after notebook of handwritten journals that she said she had kept for most of her life.  She said that she wrote in them about every single thing that had ever occurred to her (I'm not sure if she meant occurred to her mentally or occurred to her in actuality).  They were very detailed. 

The thought went through my mind that perhaps only insane people kept journals?  But no.  Everyone is entitled to jot their thoughts. Sane people  (and insane) obviously have been keeping journals and diaries since time eternal.  These days we have Blogger and Facebook and Godknowswhatall out there on the Internet.  I've even noticed that Blogs can be downloaded into little diary books, should we so choose.  But there is just something endearing about those handwritten diary pages. 

Bob Dylan says, Oh, the times they are a changin'  I guess we better just get used to it. 

-Megan-

Homegrown

 

"a goofy tribute to hemp recorded in a much higher version by the Horse."

The sun comes up in the morning

Shines that light around

One day, without no warning

Things start jumping up from the ground

Well, Homegrown's all right with me

Homegrown is the way it should be

Homegrown is a good thing

Plant that bell and let it ring... Neil Young & Crazy Horse

Stupid Chemo or Chemo Stupid

Today I had my well-woman check up at my primary physician's office.  I mean, it's standard practice; I have had one every single year for the last 22 years.  I'm not quite sure why I'm here today; at least that's what I told the nurse when she asked, what are we checking today, Ms. Megan?  I mean, I have no female parts anymore that need checking on.  So, yeah, why am I here? 

Well, I told the nurse, I have a couple of suspicious little brown spots on my arm as well as on my back that I'd like the doc to take a look at.  And ever since I had pink eye in February, my right eyelid occasionally sticks to my eyeball, especially when I first open my eyes in the morning.  And I'd like to ask her a few questions about my memory.  You know, stuff like that.  But as for pap smears and breast exams, I'm not sure if there is anything left to check on. 

I was instructed to put on that all too familiar open-in-the-front gown. At least this one was made of soft cloth rather than paper. That gown was just determined not to fit quite right --  I don't have breasts to give it form anymore.  It gaped open here and there, no matter how cleverly I tried to tie those ribbon closures. One sidelong glance at the small stainless steel table over one side, covered with a white cloth, and I knew exactly what lay beneath it; sterilized and painfully ready for the next poor "well-woman" who still had all her female parts. I am sooo thankful that my primary doctor is a woman -- a woman who has known cancer in her lifetime.  She totally understands what I've been through.

My cousin Vickye and her husband Harry sent me this funny little mug earlier this year. I still love what the mug stands for.  I openly laugh at its slogan, especially now that I'm totally done with chemo.  That said, I am still having problems with "remembering," to the point that I asked Dwain to watch me for signs of dementia.  I explained this to the doctor.  You know what she did?  She laughed.  She belly laughed.  She sputtered when she tried to talk.  When she regained her composure she said, there is nothing wrong with you.  I'm still having problems with forgetfulness, even today.  She said that she used to be the most organized woman in the world.  Today, she, like me, prepares and carries lists with her everywhere.  She said, whenever I forget stuff, I call it chemo-stupid or stupid-chemo, depending on the circumstance.  Either way, just (take a look at the mug up above) blame it on the chemo.  

And now I know what a liver spot is; those suspicious brown spots on my arm and on my lower back.  Exposure to the sun popping up on my skin.  Believe me, this doctor would know exactly the difference between a liver spot and a skin cancer because skin cancer is the type of cancer she had a couple of years ago.  And it was bad!  She's been through the worst chemotherapy a person could go through.  Believe me, she checked my skin all over for any sign of it.  But no.  I'm good.

She asked me when I was going back to see my breast surgeon.  Then informed me that every year I would have to have some sort of x-ray or imaging exam to check "the area" for signs of occurrence, also to make sure the cancer had not spread to my lungs or other organs.  

She then asked if I was considering reconstruction.  That would be a big fat NO.  I'm sick to death of surgery and drain tubes.  I do not want any more surgery that involves drain tubes or pain after the fact. I'm good.  She told me that if she had to have a mastectomy, she would just wear Band-aids and be happy.  I told her that there was a wonderful prosthetic place here in town.  They fit me with several lovely bras and two prosthetic boobs that were just perfect.  And by the way, did you know that Land's End sold the most darling mastectomy swimwear; you can fill the little bra pockets with swim prosthetics OR you can use a tip that I found on someone else's blog:  fill the bra pockets with those little round shower sponges you find everywhere.  They do the job, they are light as air, and dry quickly. I've already got mine. 

Speaking of prosthetic wear, Dwain found a web site that had some [boobs] that stick on.  STICK ON!  They are on the way to our post office right now.  And you would not believe where he found them The Breast Form Store.  I'm not entirely positive, but I think -- I think -- it may actually also be a cross-dressing site.  Hilarious!  But it had what we were looking for at an affordable price.  The thing I find appealing about stick-on boobs is, there will not be a scar running over the top of them, which is something you can not get away from if you have breast reconstructive surgery.  No matter what you do, you're still going to have that scar running across your boobs. So, I'll just keep my flat chest with the scar to remind me of what I've been through.  Then I can pick my chest size randomly

Anyway, the main reason I wanted the stick ons was so that I could wear some of my sundresses and summer tops.  Before I would have worn a strapless bra to give the garment shape.  So far I have not found a strapless bra made for prosthetic boobs

This is a picture of me (wearing my wig) holding a portrait of me taken when I was 10 years old.

The last thing my doctor wanted was to see what was growing underneath my wig.  When I jerked it off, she rejoiced with me as only another former chemo patient can rejoice, by giving me a gleeful hug. 

You know, I was wondering, faulty thinking notwithstanding, if I had enough wigs in different colors and lengths, and enough [fake] stick on boobs in different shapes and sizes, do you suppose I could be a different woman any time I felt like it, even if I don't have any more [real] female parts? 

Megan