You Don't Get It

You just don't get it. I know you think you understand because you knew someone with cancer. Perhaps your mother, or friend had breast cancer and so now you think you understand what I'm going through. You don't. 

This thought has been weighing heavy on my heart since my diagnosis. I thought I got it when my mom was diagnosed or a friend from church. I didn't. 

I didn’t get what it felt like to actually hear the "c" word. I was trying to listen to the details and pay attention, but really just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there to go get my husband waiting patiently in the waiting room. I didn't want to hear all the details until he was with me. We drove home under the weight of what we'd just been told. 
We sat in silence and disbelief much of the drive home. That day was the worst. I pretended everything was fine because I didn’t have any details yet and wanted to keep it private still. Roy was in denial the first week, not fully trusting the Oncology Radiologist until the biopsies came back. . . . ."She could be wrong" was his defense mechanism. I was positive I had crappy cancer and so my mind went straight to very dark places during that week. There's no way that you get it unless it's happened to you.

I didn’t get how hard the waiting would be. It was literally the worst part. The "official" diagnosis process seems to take forever. The different consults, the biopsies, the exams and procedures. I went through the motions trying to stay positive, but at that point, I had no idea what I was dealing with and the unknown was terrifying. How bad was it Knowing the cancer is there and not doing anything to treat it yet is an awful, helpless feeling. I wanted it O-U-T NOW! I’m sorry, but you just don't get it.

I didn’t get how awkward it was to tell other people the news. I just blurted it out! Shock value seemed to work best. No beating around the bush. . . . . .straight to the point with a brave face and deep breath. People didn’t know what to say. If they said anything, it was about me getting "new, perky boobs" which I had no intention of doing. There was some relief when the word started to spread. I didn't have to keep telling people and watch them struggle with being uncomfortable and not knowing the right way to react. This nasty secret was finally out. You don't get what it felt like to get the sad looks all the time. . . . . Shopping or seeing someone for the first time after finding out. I got the head tilt, sad smile, and a soft “How aaaare you?”  Which I quickly smiled and reassured them "I'm hanging in there” and change the subject. Don’t get me wrong, I appreciated all the well wishes and concern, but it sure took a little while to get used to the pity. I’m sorry but you just don't get it. No, you don't get it.

I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, but I had no choice but to be brave. I got through most of it just fine. I’m getting treatment because I HAVE to. That doesn’t really make me feel like much of a hero. You just don't get it.

You don't get how much I googled . . . . . searching for information, hope, stories like mine, reassurance from women who'd been there, done that. It was impossible not to. I had to educate myself on this crappy cancer. I wanted to know every "medical term" to help me feel in control of this situation I'd been forced into. I wanted to make informed decisions about my care and treatments.

You don't get what really goes on at all those “other appointments”. Why do they give you a gown when they are just going to uncover me and poke, prod, feel, and stick me with needles. You don't get the procedures that were humiliating or painful. You don't get how confusing “options” really are and how many doctors there are that want to see you ALL the dang time for next five years!!!  I wanted to be involved in my own care, but the stress of all the options was sometimes too much. I’m sorry, but you don't get it.

You don't get how it sometimes feels like I am all by myself. I have a great support system in my family and it was surprising the people who stepped up to help, bring meals, cards, and was just there when I needed to talk. You don't understand how much it hurt my feelings that some of the people I expected to be there were NOT. People acted differently towards me and it hurt, a lot. I'm not contagious! You don't get what it feels like to not have boobs and to have fluid in your chest wall. You don't get it when I can't sleep on my side because my incision is all the way around my chest and under my arms. You don't get it when I say I hurt or I'm uncomfortable. You just don't get it. . . . . unless you've been through it.

You don't get the mood swings. One day I might feel confident that I'd completely beat this crappy cancer with no problem; I felt like I could take over the world! Bring it on! And for no good reason, the next day I was just convinced I was going to be one of those sad stories people tell their friends about. The moods would sneak up on me without warning. Literally anything could’ve been a trigger. You don't get what it's like to not be able to lift your arms or dress yourself due to the dang underarms being swollen from lymph gland removal. You don't know what it fells like to look at yourself in the mirror and have a 28" incision staring back at you. My body changed so quickly.  It’s hard since my appearance is tied more closely to my identity than I'd like to admit and these were constant reminders of what I was up against. I just wanted to feel like myself again and MOVE ON past this crappy cancer. I am at 6 weeks now and still healing. It takes more time than I thought it would. I'm sorry, but there's no way you get it.

You don't get that when I said I was tired, I really meant so much more. Sure there are words like exhaustion and extreme fatigue, but there should really be a separate word just for cancer patients, because it’s crippling! Really! Some days I really wondered how I trudge forward. And then there were the days that I had lots of energy and was restricted from not lifting anything heavier than a carton of milk because I'm still healing on the inside. I reached up in a cabinet and pulled something. . . . . .  now it has to start all over to heal back again. You just don't get it.

I didn’t get how much time this really takes away from my life. I was told phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep me for what I was about to embark on. But now they just seem like corny catch phrases. Stupid crappy cancer! It completely took over my life! I had to stop doing things I love, I had to cancel plans, church, vacations and other activities. I had to miss out on things that were important to me. Those things made me cry more than having the crappy cancer did. You just don't get it.

You don't get how much I worried about my daughters and my grand kids. I worried about how this was going to affect them. I worried about not being able to keep up with them or be able to enjoy them on my bad days. I can't even pick up my grand babies! I was concerned they’d be scared and confused. And honestly, I worried about leaving them. You just don't get it.

I understood that everyone promises “in sickness and in health” when you get married, but I still felt like he didn’t deserve this. I felt thankful when he would say “go sit down and let me take care of this" but my heart hurt thinking about a future that didn’t have me in it. Or him in it. What would I do without him? How do women do this alone? He was beyond caring and loving. He kissed my scars and told me I was beautiful, sexy even! (Love is blind) And I know you don't get the emotions of that. No, you don't get it.

I didn’t get that it never ends. Never. I used to think that cancer will be just a phase in my life. Just like high school or something. . . . . it seems like it drags on and on when you’re in it, but I know in reality this will all be a memory. But it is not a phase! The treatment won’t last forever, but I am changed forever now. The worrying won’t stop, the uncertainty won’t stop, the fear of recurrence or an awful end won’t stop. I live with crappy cancer. I will always live with crappy cancer and it's recurrence. The next five years seems to be that "magic" time frame that I will deal with this crappy cancer at least every three months. I hear that gets better but only time will tell. And time is precious. I’m sorry, but you just don't get it. You want to. But unless it's happened to you; unless you've had crappy cancer, you don't get it.

My eyes are up here!

Bras are completely optional for me.  . . . . That's right gals! Bring on the jealousy! One of my gal-pals told me her shoulder indentions hated me! Love that!

I'm rebelling against putting an uncomfortable bra on—-so I could put something uncomfortable and heavy inside, so that those around me are not uncomfortable! God forbid they should be uncomfortable around my flat chest. And good grief, let's not make everyone uncomfortable regarding my lack of curves.

Society and commercialism makes women feel like we have to be thin and have perky boobs. We must look feminine in our figure and attire. Sex sells. They attack our self-esteem. And there's so much information that bombarded me with reconstruction that it immediately turned me off. 

I chose no reconstruction. I'm trusting my gut. I've been asked multiple times why I made that decision and I don't mind sharing my reasoning.

First reason: I had 'foreign' (several in fact) crap in my boobs and wanted it gone. Why would I put something else foreign in my chest? I just saw the potential for more problems.

Second reason: New breasts would not restore an erogenous zone. I have no feeling in my chest due to cutting the nerves. Fake ones would have no feeling either. They could not nourish a baby. They would only fill out my clothes to make other people feel comfortable (which I don't care about)
and perhaps allow me to pretend that I had not had crappy cancer.

Third reason: Reconstruction would require more hours in the operating room and involve a plastic surgeon. There were a couple different options I could've chosen, including a 'free' (she said with sarcasm) tummy tuck, but that's another incision and longer recovery, along with added possibility of problems.

I refuse to believe that I must have fake boobs to be accepted, fit into what society thinks, or to make other people feel comfortable. I would feel so weird with fake boobs. And as I mentioned in an earlier post, (Lemonade) I'm looking forward to art on my chest!

I'm dying

I'm dying. I've been dying for 59 years. We all die. Survey says: 10 out of 10 people die!
Crappy cancer makes it all a little too real. I despise the dry, flaky skin. My eyeballs are floating because I can't seem to drink enough water to quinch the cotton mouth. And dang. . . . .I'm exhausted. My batteries are running out. However, I'm not 'struggling' or 'battling'. I'm LIVING!

There are so many afflicted with crappy cancer. I'm not unique. They are all around us if we pay attention. The financial strain it puts on a family is tantamount to the physical and emotional strain. And it has become crystal clear to me that it's a disease that happens to somebody else. Crappy cancer doesn't have a face to other people. 

And there is no such thing as "cured" by the way. We just go "into remission". So why am I referred to as a "cancer survivor?"
After the cancer is removed following surgery, we are given a stamp of being "cancer free". Then there is the treatment. Wo. Is. Me. That's the hard part. FIVE years of treatment. 1825 days. Really? Who decided that magic time frame? Why not 4 years, or 5 years and 6 months? Treatment isn't a fight against crappy cancer itself, but against 're-occurance'. . . . .which is an invisible devil! Is that when I become a survivor? When is the magic day that I can be declared as having won the battle? When will I celebrate a cancer free life?

Every day is a gift and I'm trusting God that crappy cancer was all a part of his plan. It really doesn't matter when I die or what causes my death; for I know this world is not my home and I shall live forever. . . . . just not in this diseased body.

Now don't misunderstand me! I would really like to stick around awhile longer and enjoy my beautiful grandkids! And yet, my name is written in the book of life and my days are numbered.

I ask God every day to show me how I can use my crappy cancer to help someone and bring Him glory. I may never know if I do but I'm sure gonna try. I consider myself blessed.

I've never asked "why me?" Why NOT me? I know the moment I will be cancer free forever, although I can't tell you the exact date or time. Only God knows. And as I meet my Lord in my heavenly home and perfect body, I will be cancer free.

2 Corinthians 4:8-9,16
We are afflicted in every way, but not crushed; perplexed but not driven to despair; Persecuted but not forsaken; struck down but not destroyed; so we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.

Snack Attack

I'm a snacker. I'd rather snack all day than eat a meal. My precious grand-daughter is like that. 5 minutes after eating a meal, she's asking for a snack. We should all have her metabolism!

Crappy cancer has changed my eating habits. My appetite is far diminished from normal, so there's not a lot of cooking happening right now.

I'm supposed to eat healthy and cut out sugar and carbohydrates, which feed cancer. "Colorful" foods describe it best.

Now I really do like these food choices, but I also love chocolate and ice-cream. If they are colorful ice cream does that count?

Antioxidants are cancer fighters. I'm not going to go into the scientific explanation of what antioxidants do and why we need them because I'm sure you don't care. Unless you have crappy cancer. Then you care. Because cancer lurks somewhere in our bodies ready to come back again. We don't ever "cure" cancer. We merely put it in remission for a time. 

So as a "cancer survivor" of cervical and now crappy breast cancer, I dang sure want to give my body every chance of fighting off a third bout of this dumb crappy disease.

I most likely am facing another surgery to remove my ovaries. (Oophorectomy) Sounds weird, huh? Like it's an "oops" mistake. Wishing now that I would have insisted they come out in 1983 when I had my hysterectomy. I probably wouldn't be dealing with crappy cancer now, since ovaries put off estrogen and my lumps were estrogen positive. Hindsight and all that!

So I'm eating lots of colorful foods, avoiding sugar and carbs as well as red meat. I'm starving to death! But hey, maybe I'll lose some weight! That's it Charlotte, let's look on the bright side. Repeat after me: Food is only fuel for the body. Food is only fuel for the body. Food is only fuel for the body. . . . .

The Trouble With Cancer

Before my scheduled double mastectomy, the house got a good cleaning. I spent one entire day making my bedroom a place of comfort and serenity. I brought in a chair for visitors, along with pink bracelets to share and cards to hang in the shower with instructions on self breast exams. It will be three weeks tomorrow and I didn't have one bedroom visit. Not one.

I mostly spend my days in the recliner now that I'm able to move around the house better. I've had a couple visits from our church and besides my BFF, only family. I'm sometimes dealing with the mundane days of not being able to do anything because I'm supposed to "take it easy" or my drains will have to stay in longer. Crap. It's been 3 weeks and they are still pulling 35. (They have to get below 20cc in a 24 hour period.) I read. Think. I play on Pinterest, think, watch TV, nap, think and read some more. I'm bored. Bored l tell you!

The trouble with cancer is that as soon as you are diagnosed, everyone kinda disappears or fades away. Some might talk about your chances of survival in the third person, if they talk to you at all. Then comes the whirlwind of surgery and treatments and everyone suddenly stops talking.

Oh, I've received lots of cards in the mail. . . . . . And I'll make no bones about it, but I find myself getting irrationally angry at my peeps (and strangers as well) for going about their business of daily life. They are carrying on as if everything is normal! EVERYTHING has changed for me and they all act as if nothing happened! I get it. I do. Because I was on the other side once. What do you say or do when someone you know has cancer?

My precious husband has been my rock. . . . His gentle ways of making me feel like it's going to be ok. He holds me when I need held. He kisses my scars and tells me I'm beautiful. I hurt for any woman going through this alone.

Let's not forget this still unfathomable disease started with a tiny lump in my boob. Several tumours discovered in both boobs, in fact. My lovely boobs that were the perfect size. They were sometimes in my way and a nuisance but they helped conceal my belly bulge! I at least had curves! NOW I have the absolute weirdest figure of all time.

Admittedly, I'm usually pretty flippant about this whole cancer ordeal. I smile my way through it most of the time. Perhaps my moods are knocking on gloom's door today as I approach my first Oncology appointment. Or maybe it's because I desperately want to yank these dadgum nasty drain tubes out!!!!

I'm physically uncomfortable, sometimes in pain, and continually trying to wrap my head around my body image. I stare in the mirror at what crappy cancer has done to me and I'm shocked each time. The simple act of taking a shower is so arduous. I can't raise my arms or move them very much. There's huge swelling under my arms and my FLAT chest is still colorfully bruised. It's preposterous to assume I'll be able to "get on with my life" with crappy cancer as a stowaway. Welcome aboard crappy cancer! (She says with dripping sarcasm) I'm tired. So tired.

I miss my life as I sit here alone. I want to get dressed (without the drains) and drive to town. The holidays are upon us and I want to participate. . . . . I want to be ALL IN and not an observer. I'm actually working myself up to being ticked off! Crappy cancer makes me mad! And so you, the reader, whoever you are, is who I unload on.

I hope you'll forgive the honest reflection today. I promised myself that I would always be honest in writing this blog. My personal self (as opposed to my blog self) is fearcely private. I'm fine with spending time by myself and usually enjoy it. Sometimes my alone time is for other's protection and my sanity. I've even run away from home a few times to regroup. So why am I ranting?  I can't explain it. Cancer gives me dry skin, dry mouth, constipation and moodiness. I'll survive. Tomorrow's a new day. The End.

The Fun Continues

              Musings. Random thoughts.

I'm living in a world where crappy cancer has invaded.  . . . . .it's everywhere! It has taken a front seat in my life permeating my every thought. I'm meeting so many people who are all a part of this "sister-hood" club involving breast cancer. The women I've met through this crappy cancer have been amazing, as well as a resource of information and support.

I've never noticed other women who have had mastectomies and now I do. We are all part of a club we didn't ask to join.

I don't even bother with a gown in the doctor's office any more. Any assemblage of shyness or privacy fades with crappy cancer. I was poked and prodded, squished and smashed, multiple needle sticks, Xrays and Sonograms. My boobs were exposed and felt by multiple medical personnel. Besides, what would I be hiding? Just a bare chest here people! Nothing to see!

Crappy cancer is a taker. It takes away from your shyness and modesty, self esteem, and courage. It continues to take our finances, lifestyle, energy, emotions, health, security and time. Cancer takes a lot. Crappy cancer takes. a. lot.

I live with the constant reminder of cancer. It will forever be a part of my life. I was naive enough to consider that I wouldn't ever have to worry about breast cancer again.  . . . . .NOT! Will it come back? Probably. I need to be diligent and live a healthy lifestyle, and continue to cooperate with my team of doctors. Stupid crappy cancer.

I'm at the 15 day post-op and still experiencing pain and huge discomfort. Is the surgery worse because of the fibromyalgia, or is the fibromyalgia worse because of the surgery? I'm still mad at those that told me there was very little pain! I'm mad at crappy cancer for invading my life. And I'm mad that they whacked off my boobs! I'm mad that amputating my boobs leaves no guarantee that I won't get cancer again!

The bruising is spreading up my chest and my skin is extremely sensitive to touch. The muscles in my back are giving me grief and I'm convinced I fell off the operating table and hit my back. My underarms are the worst. But my incision is looking very good. If I could just get past the pain. . . . . Perhaps once the dadgum drain tubes are out I'll see improvement.

WARNING ⚠  WARNING  ⚠  WARNING
    PICTURE OF CHEST AND INCISION

WARNING  ⚠ WARNING  ⚠ WARNING

          WARNING   ⤵⬇ WARNING


                  15 days post-op incision

Hubster took me to get my flu shot. I sure don't want the flu on top of my recovery. Afterwards, we stopped at one of the "dollar" stores on every corner and bought some Halloween candy. It felt good to get out of the house for a short time but wore me out.

I hate crappy cancer. I hate that it's all I think about right now. I hate that I can't sleep confortably. I hate that I'm on limited activity and my sweet husband is having to take care of everything.

But I love that I have him to help me. I love that he's so supportive. I love that we caught crappy cancer before it was too late. I love that my family surround me with love. I love that I have excellent doctors. I love that the great physician, my Savior, walks with me on this journey. I love that HE'S in control. My faith has never wavered from Him because of this crappy cancer.

Just Keeping it Real

My days are filled with pain. I have not so good days and really bad days. I have to remind myself that it's only been two weeks. There are just days that hurt more than others. I know healing is taking place. Some days I'm brave and forge ahead and others. . . . . . well, crappy cancer kicks my butt on those days.

I want to get dressed but these drains are in the way and cumbersome. I want to sleep on my side but these drains are in the way and wake me up every time I move. Showers are difficult with these drains in the way. Are you seeing a pattern here?

I'm forbidden from driving yet or doing anything physical. Rest is prescribed. Right. Whatever! Stupid dumb crappy cancer has not only invaded my body but also every aspect of my life. My life is irrevocably changed for ever, because it will always be niggling at the back part of my brain. . . . . . . like the little devil that sits on my shoulder taunting me. Crappy cancer has forced me to face my mortality. It makes life more uncertain than ever before. This disease lays bare my vulnerability. I'm not in charge and I hate feeling vulnerable.

I've been so stoic and upbeat for the most part, I think. I know a positive attitude is important for my health. If you are newly diagnosed with breast cancer, listen up! Be real. Be honest.

Yes, it's important to have a positive attitude but don't force what you don't feel. People will make you feel like you have to put on a smiling face. It's not about them. Don't feel pressured to be strong for everybody else.

I get all kinds of sage advice from people who have never walked in these cancer shoes. "Be patient" they say. "It'll get better." "Don't rush it" is another popular answer. "This will all be a distant memory." I know they mean well and love me. At least they are saying something to be encouraging!!!! I have friends who don't know what to say so they say nothing and are noticeably absent.

Cancer isn't contagious but it seems people are so scared of this dreaded disease that they stay away. People are busy living their lives and don't want to be reminded that cancer exists. I get it! I was that person prior to September 9th. Crappy cancer happens to other people.

I'm different. I'm no longer the same person prior to my diagnosis. I will one day be pain free and discover a "new" me. Blogging has given me an outlet to be honest with myself and meet this crappy cancer head on. I realize that it's not for everybody. We all face our demons differently. If I've helped just one woman with my honesty, then baring my soul would've been worth it. I'm looking forward to getting past this pain to reclaiming my life.

Anatomically Correct B♭

I'm not a barbie with a perfect figure. Never have been. I was 30 pounds lighter before fibromyalgia. Because I'm not as able to be as active as I used to, and because of the meds, I'm carrying some extra pounds around.

My decision to go flat was very personal. I've explained those reasons ( see Lemonade) and I feel confident I've made the right decision and the best choice for me.

I'm no longer anatomically correct. My doctor took me seriously when I told him to get all that boobage out from under my arms. He did. My incision goes all the way to my back. And dadgumit, it hurts!

I'm glad I won't have that bulge (aka: boobage) under my arms any more. The healing and the pain is taking longer than I thought it would, even though I'm improving daily. Baby steps. But by golly, my pits feel like they've been sandpapered!

Crappy cancer has deformed and destroyed my body. It certainly wasn't that great before but now it's worse. And it occurred to me that even wearing a prosthesis, there won't be cleavage.

I need a tee-shirt with "B♭" on the front. I refuse to be ashamed or embarrassed about my body. It's real. I'm  alive. I pray I can help other women. I'm now known as a 'breast cancer survivor' (a title I never wanted) even though I'll live with crappy cancer the rest of my life; and more especially the next 5 years.

I'm still struggling with how weird it feels without boobs. I've searched my brain for a way to describe it and there simply isn't one. It's going to take some getting used to.  . . . . after all, I've had boobs for the better part of my life!

The struggle is real people!  I've struggled with back spasms, restless leg, chafing in my pits, pain and tenderness in my chest, exhaustion, and a killer of a headache. Yep, I had all I could deal with and finally cried. Boohooed is more accurate. (I didn't even cry when I got the news, so cut me some slack here) Cried really hard for a good 10 minutes while my hubster comforted me and held me in his arms. This is HARD! Stupid crappy cancer has forever changed my life and that ticks me off!