It Ain't Over

Life after crappy breast cancer means returning to some familiar things and also making some new choices. The song says "It ain't over 'til it's over," but when you've had crappy breast cancer, you discover that it's not even over when it's over!

After a marathon of the crappy cancer diagnosis and treatment that seem to go on forever, one can hardly wait to get back to a normal life again. There is no normal! I'm trying to find my new normal. My body has been through an enormous assault. I'm still recovering. I can feel my nerves actually regenerating. . . . . a not too pleasant feeling. And other places that will forever remain numb. 

I have embarked on another leg of the trip. This one is all about adjusting to life as a breast cancer survivor. In many ways, it's a lot like the life I had before, but in other ways, it's very different.
My relationships with my family, spouse and friends. . . . . to my eating habits and (EEK) exercise have changed my life in ways that I hope and pray will last well after treatment ends. Treatment has been tough. I hate the side affects of these crappy cancer meds. How do I fight this lingering fatigue? What should I eat or NOT eat to help prevent a crappy cancer recurrence? 

The emotional ups and downs are frustrating; with most of it due to the crappy cancer therapy. There are just so many things going on that it's hard to pin down what I hate the worst. Fatigue has got to be up there at the top though. Bone weary fatigue is no joke! NO ENERGY at all is making me feel much older than I am. 

My sight has been affected. My memory and cognition have suffered. I don't sleep well. I hurt all the time. It's not just soreness; it's a deep down, my bones feel bruised, hurting. Just another not so pleasant side affect. And the hot flashes!!!! Oh Em GEE!!! These are so INTENSE!! Much more so than when I went through menopause! 

I want my life back. I want my body, mind and energy back. Am I gambling with my life if I quit therapy? Studies suggest that I am. I'm on my second one and it's about as bad as the first one. I'm supposed to take this crappy cancer therapy for 8 years. EIGHT YEARS!!!!  It feels like an endless process. However, studies show a great link between estrogen positive cancers coming back, sometimes decades later.  Breast cancer is a smoldering, sneaky, insidious disease that is never truly over. So yes, I will most likely continue the treatment for the recommended time and suffer through it.


Everybody thinks I'm through. Done. What's the Big Deal anyway? They just don't get it. It Ain't Over! I'm still dealing with recovery. I'm still dealing with the therapy to prevent a recurrence. I'm not springing back to my old self. She's gone. She basically died the day I got the crappy cancer diagnosis. I'm having to reinvent myself. I'm having to rest more often. I have to make notes so I don't forget things. I'm having to carry around a fan and even go outside in 30 degree weather just so i can BREATHE! (you just have no idea how intense these dang hot flashes are!) 

It Just Ain't Over. 

SAD

I began blogging almost immediately after my diagnosis. My posts have been real, raw and honest. It's my therapy. So today, I'm being honest yet again, just when everyone thinks I should be happy and blessed that I'm alive, I'm actually sad. 

I survived crappy cancer. I'M A SURVIVOR! And yet the lingering affects has me depressed much of the time. I find that I'm sad, tired and just want to be in bed, with a good book perhaps, and ignore the rest of the world. Tears seem to swim in my eyes unbidden, with a lump in my throat that I have to fight down to swallow. DO NOT CRY! I hate to cry. 

I'm supposed to be happy and grateful, to embrace my second chance at life. Many survivors can point to the positive changes in their lives, with a markedly different outlook since starting down that scary black hole called crappy cancer.

There are many challenges that cancer survivors face, including risk of recurrence, increased risk of second primary cancer, reduced quality of life, economic burden and treatment side effects. But also on the list include emotional distress, depression, anxiety, uncertainty, altered body image, and survivor’s guilt.
 
I've had depressive tendencies my whole life — being on antidepressants since in my 30's. Winters and short days always affect me. (SAD) I try to get outside as much as possible, because Texas doesn't usually have harsh winters where I live, but it's the lack of sunlight and daytime hours that affect me. I joke that I'm like a chicken, up when the sun comes up, but when it goes down, I'm ready to roost. . . . . even if it's only 6:00!

When a bankruptcy forced me out of an almost 18 year job that I loved, it threw me into depression for months. The loss of income and financial strain has been extremely stressful on me. Then, my fibromyalgia flared up with the stress and hasn't seemed to subside, so I'm ALWAYS in pain. I just hide it well. Then, my mother was faced with her second bout of crappy cancer and life happened to me with crappy breast cancer. The past three years have been HARD! 


But those bouts did not compare with the dark curtain that fell over my soul and changed my personality within this past year. I'm no longer confident in my self and hate to be around a lot of people. I miss church, but I fight a panic attack the whole time I'm there! So I study the Bible a lot at home. 

Fatigue is my major complaint. It drowns out any desire to move out of my recliner. All my energy has completely vanished. Brain Fog comes with fibromyalgia, but now it's compounded with my inability to concentrate. I can't find my words. Tired, brain-addled, sad, I feel worthless and guilty most of the time. I have no right to feel like this. . . . . I have a good life, wonderful marriage to a great guy. . . . . . But there are women dying of this crappy cancer and I have survived. How do I pull back this dark curtain of despair and get to a happy place? How can I make this little black cloud over my heard go away?

I pray about it a lot. I do my best to find joy in the tiny things in my day. I enjoy my grand kids more than anything and they make me forget about the black cloud and bring me joy. And yes, I 'm on meds to help me fight this feeling. I'm trying, I really am.

Pinktober

It's October. Everything turns pink with a little pink ribbon on the package. . . . . clothes, socks, toilet paper and even soup cans! Consumers are led to believe that by buying these products they are doing something good for breast cancer research.  Not so. Much of the time the ribbon is there just to raise awareness of breast cancer, as if you did not already know that it exists.  Companies use our crappy cancer as a way to make money. Most cancer patients are offended by it.

Some cancer patients wear the pink ribbon proudly, giving thanks for both the symbol and its attendant charity-dollars to fund a cure. Others hate it with a passion. Not all the hype and commercialism is bad. Between 1991 and 1996, federal funding for breast cancer research increased nearly fourfold to over $550 million. And according to the American Cancer Society, the percentage of women getting annual mammograms and clinical breast exams has more than doubled over the last decade. That's a good thing!

44,000 women a year die from breast cancer.  A woman could develop a very early stage cancer, have it treated, and months later be diagnosed with stage four.  There's a woman in one of my support groups who had stage zero cancer, meaning it barely registered on the ole cancer-meter, but it came back months later as stage 4.  My cancer was caught early as stage 1 and didn't require Chemo or radiation. I'm blessed enough to just be given pills (with their own set of side affects) that is supposed to help prevent a recurrence.  BUT crappy cancer cells are devilish little things, you know. I never get cocky enough to think I'm never going to get it again. Breast cancer has a history of coming back in the lungs, bones, colon or brain with the intent to kill.

So, (I may have expressed this before) it's hard not to think about it every day. There seems to be a little black cloud hanging over me to remind me that I had it, along with the side affects and taking the stupid pills every day, that it's almost impossible not to think about it coming back at some point. The risk of recurrence for women with hormone positive breast cancer (the most common subtype representing around two-thirds of all breast cancer diagnoses- and mine was hormone+) persists after the five-year mark up to 25 years. I'll take the meds for 8 years according to my team of doctors, but there's still that 25 year mark of a black cloud over my head.

Pinktober doesn't make me nauseous or angry like it does most cancer patients. I encourage everyone to use this as a time to schedule their mammogram and I don't get upset when someone buys me a pink ribbon gift. I like them and I like pink. It's a month long parade of pink. . . . .  and just know that your purchase most likely doesn't fund a cure. But please consider giving directly to a breast cancer organization whose work you believe is most essential to addressing the breast cancer epidemic.

Cancerversary

Well, it's been a year already. I can hardly believe it. I'm still healing on the inside and can actually feel my nerves regenerating. My muscles in my chest are pretty useless and get really sore when I try to do anything requiring them to work. Under arms are still numb and tender as is my chest. There are days that I don't notice or think about it much, and other days when it's so tender that it's all I think about.

The surgery was the easy part. This past year recovering was the hard part. I had very few friends who were helpful during that time. I expected them to visit and surround me with love, meals, assist with housecleaning, etc. Boy, was I wrong! It's been very hurtful and disappointing not to have all that support from those I thought were my friends. That was difficult to deal with and added to my depression. My wonderful husband was my rock and still is. He does so much for me to prevent me from getting too sore. We have pretty much gone through this crappy cancer journey alone, he and I.

He goes with me every 3 months to see the surgeon and the Oncologist. Those first 9 months were the roughest with the meds side affects. The mood swings would hit me like a brick with no warning or reason. Insomnia. Hot flashes. Hair loss, nail loss, flaky skin, fatigue, loss of appetite, HIGH anxiety. . . . .just to name a few. I never felt good.

I've now started a new medicine that I've been on for about a month and it seems much better so far. I've also been given something for the anxiety which is helping me sleep better. I still have the hot flashes, VERY INTENSE hot flashes, but the other symptoms are fading into the background. I'm supposed to take it for 8 long years to lower my chances and prevent the cancer from coming back. So, I'm hoping I can deal with what it does to me for that long. 

Crappy cancer has taken so much from me. I'm just trying to find my "new normal" and adjust to life as I now know it. I rarely feel good or have much energy, but I do try to push myself to stay active as much as possible. I'm still standing. I'm alive and cancer free. I'm blessed and realize the little things in life are important.

Bone Weary Fatigue

By far, the biggest physical challenge I've faced after cancer, is that of chronic fatigue. Fatigue doesn't fully describe the tiredness I feel constantly. . . . . it complicates my sleeping pattern,  affects my mood, weight, and more.  Even after fighting crappy cancer, the familiar side effect of fatigue hangs on, and in full force.  

After the pain from surgery and recovery had finally subsided, I realized that I had non-stop low-grade aching and burning throughout my body that I never felt before crappy cancer, and that it never really went away. As a Fibromyalgia sufferer, I am familiar with pain and fatigue, but this is by far different and somewhat worse. My body has been put through a lot and still suffers with the side affects of the crappy cancer meds. No hormones (I'm on hormone blockers) creates it's own set of problems. After all, our bodies were designed by God to be a perfectly and fine tuned instrument, with various organs secreting hormones for specific purposes. I HAVE NONE!
 
My body was ripped apart and then sewn back together. My body took a beating fighting crappy cancer, and there’s still a tremendous amount of healing and rebuilding that needs to be done, even after 10 months, and all of that requires a lot more rest.

I went from being just fine on 7-8 hours of sleep per night before cancer, to needing at least 9-10 hours after. AND often times, an afternoon nap. Anything less, and I struggle badly throughout the day to move and stay awake. My stamina plummets, and I have to carefully balance the amount of physical activity in a given day, or else I'll simply run out of gas. I never feel like I have anything more than a half tank of gas for the whole day, no matter how well rested I might be. Plus my body feels like it has aged considerably!

This fatigue isn’t an easy thing to manage while trying to live the best life that I can after crappy cancer, while keeping up with my busy life, grand-kids, and part time jobs. Everybody tells me I look great, but I feel this low-grade aching and burning in every single muscle in my body down to my bones, and my continual struggle for energy only makes me even more tired!

Progress, if you could call it that, is slow. It seems like I am going nowhere, but I'm happy for whatever incremental gains in strength and stamina that I can muster up. I find myself being proud when anything as simple as laundry is accomplished!


I'm tired just writing this. I think I'll go sit in the swing and try to stay awake.

It's just a little grey hair!

I'm knocking on the back door of 60. I don't love my body. I don't miss my boobs either but my buddha belly looks bigger without them. There's wrinkles, fat, and grey hairs. I have a LOT more grey hairs that I haven't decided to color/cover up yet. I earned every one of them!

There's a not so pretty 'pink' side to crappy cancer. It damages you, hurts you, takes from you, disfigures you.  Crappy cancer trying to take my femininity, my confidence, my happiness and my hope. I struggle with them all.

My choice to not have reconstruction was my own after much research. It is a very personal and individual choice. I do not regret my choice at all but that doesn't mean that it's been an easy adjustment to my self image physically or emotionally. I still get weird stares from time to time. I even had a stranger congratulate me on my pregnancy! (On the plus side, I must look young enough to even be pregnant!)

I've been spending some time trying to find my "new normal" in the new me. I've changed; my likes, my dislikes, my passions, my views, my heart. It irritates me when people tell me I've changed. Of course I have, DUH! I had CRAPPY CANCER!!!!

When I was diagnosed and going through surgery and recovery, I was needing encouragement from friends. What I needed was positive attention, visits, calls, and caring friendship at the time. I didn't get it from those I needed to get it from. I'm still working on forgiving them. My family, especially my husband of almost 39 years, were the most attentive. He sees my struggles every day, while everyone else has moved on. Is breast cancer so rampant that it's become "not important enough" or is it simply that people don't know what to say or do? It was as though I was contagious or something. I needed messages of caring, cards in the mail (do people not do this anymore?) hearing that I was brave, loved and prayed for - especially when most days I felt the farthest thing from strong and suffocated from fear.

Now that the surgery is over, it's like sneaking out a side entrance, closing the door and no one follows. It's the same as when a loved one dies and everyone is there to rally around you, but the hard part comes when the funeral is over, time passes and things go 'back to normal' and the quiet settles in. You see, just because the surgery is over, I'm still healing. I'm taking treatments that have tremendous side affects that I hate. I struggle with them and waver if I want to continue them for 5 years or not. My struggle hasn't ended. 

The side effects are very real.

1.  TIRED! The overwhelming, bone weary, fatigue is awful. Nothing helps this and there are days (most days) when I have to really push myself to get anything done. On the outside, my body may start to look more normal, but on the inside it is still working overtime on the cellular level to repair the damage. It's only been10 months and I'm still healing physically. (Emotionally. . . . . it's up and down) By noon I feel like I've run a marathon and cannot hold my eyes open. I take 2 hour mid day naps, wake up defeated because I'm still tired and I wasted the day. I feel like life is passing me by and I'm not participating. I hate to even leave my house. Fatigue isn't the only physical side effect. 

2. CURVY!  I am accepting my new body image. Overall, I don't miss my boobs. I don't like the way my clothes fit weird, but I don't miss that bra! My ribs stick out below my concave chest, and my stomach has 'caught' all the extra fat that my boobs used to catch. I can't see my feet! I don't look good naked anymore!

At least I've gotten to the place where I see the scars as a victory and not a loss. I've even come to a point in my recovery where I'm falling in love with my scars and debating on NOT getting the chest tattoo after all. I just know that making an emotional decision about that isn't best for me now.

2.  PTSD after cancer IS real! I live in constant fear of "when will it come back?" Not working full time allows no more distractions and busy work to keep my thoughts from wondering to dark places.  Where will it come back? How will I know, and will I catch it in time? What are my passions? What does God want me doing with my time and how does He need me to use this experience? Am I doing too much too soon? Moving too fast? Too slow? 

I have anxiety that is so foreign to me. I have spoken in front of large groups as a leader, and led, groups in my "other life." But, I come close to a panic attack just sitting in church with a few hundred folks. I have to stare down at my Bible and block out the crowd, all while holding on to my husband to stay calm. Just the thought of being around a crowd of people scares me now. I have huge mood swings that come out of nowhere. They hit me like a hammer to the head and I can't explain what's wrong. NO hormones is wreaking havoc in my body. God put those various hormones in our organs for a reason, and the treatment I'm on is blocking them all. WHEW! There's no explaining the awful side affects of no hormones in my body.

3. HEALTH. . . . . Am I eating right? No. I crave sweets constantly and give in to that craving more than I'd like. Cancer loves sugar. Will that cause the cancer to come back? Am I doing enough to prevent it? Is this pain normal or has 'it' returned? Was that lump there before or is that cording from the surgery? I feel my chest so much, that I don't even realize I'm doing it. I want to know every inch of my chest to be able to find any change as soon as it appears. It's sensitive to the touch and numb in most places at the same time. Lack of hormones prevents good sleep. Which contributes to the fatigue. I should be exercising for my health, but every bone in my body hurts from lack of hormones. It's a never ending vicious cycle.

4. DOCTORS! The on-going. . . . . Yes, there are still appointments, follow up, blood work, tests etc. I'm sick of them already. I'm on my own now because everyone assumes I'm OK.  Just sitting in the waiting room at the cancer center is emotional. It's surreal! I had crappy cancer. My heart begins to beat fast just pulling into the parking lot. I do NOT want to be here!! I'm sick of taking my top off so doctors can feel my chest. I'm tired of the blood draws. I don't like their nonchalant attitude which makes me feel unimportant. 

5. PAIN! . . . . Fibromyalgia (diagnosed 4 years ago,) comes with it's own set of  physical problems, exasperated by the crappy cancer surgery, therapy and drugs. I never have a day without pain, which causes moodiness. Yet another never ending cycle. I can no longer commit to something and then have to stop or cancel because I wasn't ready or just flat couldn't do it.  Either I can't move that day physically, or my emotions are a wreck with anxiety. But the fear of 'wasting' time is also overwhelming. I hate all these drugs stacked up on my kitchen and bedroom window seal.

6. LOVE! And then there's my marriage.... I have discovered a closeness, trust and friendship in my husband after 38+ years of marriage.  I pray that my children are able to know this type of love with their husbands. And I pray they both realize and know how much they are loved by this man. He is truly a unique person full of love over flowing for his family. I never could have gone through this crappy cancer journey without him.

One good thing has come from this: my perspective on problems has changed; realizing that so much in life is truly not worth worrying about or being upset over. Like the grey hairs. It's just a little grey hair, after all. Nothing to get upset about.

Crappy Cancer Rears It's Ugly Self Again

Having breast cancer can lead to emotional distress and thousands of insecurities. When I learned that I had breast cancer, I felt like a brick house fell on top of me. Then I was numb. Then I was scared. Then I was in a hurry. (Take it out!!!!) There were a plethora of emotions I went through in those first few months. . . . . still am. It isn't unusual to suffer from a blow to our self esteem with a cancer diagnosis. Crappy cancer causes many physical issues as well as having an impact on our soul.

From the moment that you hear the words “breast cancer,” your mind goes to the worst possible conclusion. Breast cancer is a harsh reality of our immortality; it leaves our bodies scarred no matter what treatment we might need, or choose to have. The emotions still hit me like hammer upside the head when I least expect them, and for no reason at all it seems. These insecurities leave me feeling overwhelmed and alone. I still have insecurities about my mastectomy scars and how I look. (My chest is still tender, so there's a constant reminder.)
 
I'm still getting used to my new body .  . . . . The "new me."  I'm not so sure how long that will take. Self-healing is a process to my well-being . . . . .and will most likely take the rest of  my life. Why the rest of my life? Because even when crappy cancer is gone from my body, I am affected and changed forever. The person I once was has a new outlook, and a new physical appearance.

I had planned on a tattoo to cover the scars, but those dollars were spent on more important things. Now, I find myself having second thoughts. There are days when I really want to get it done NOW. . . . . and days when I want to embrace my scars. With the emotional anxiety I'm still going through 8 months post BMX, I'm just giving myself time. 

And in the process of all this anxiety and insecurity, crappy cancer rears it's ugly self again in the form of skin cancer on my nose. I had to get out in public with stitches on my nose! It was so hard. With the stitches out, I'm able to mostly hide the still healing sore with makeup. My body has failed me and I'm not liking it one little bit.  

I've changed. I'm not the confident, strong extrovert I used to be. Crappy cancer changed me.

Crappy Fear

Fear isn't just something that we faced head on at the time of my cancer diagnosis. We stoically marched forward as fast as possible to get it OUT! I suppose it's normal to experience fear in the months after surgery and treatment. It can hit you at the most unexpected times and in the most bizarre ways.

Like when standing in line at the grocery store one day, only 5 short months after my cancer fight had begun. I had been feeling good that day, and had finally managed to not allow cancer to take over my every thought, when I heard two people behind me start talking about a friend diagnosed with breast cancer, and how awful that was. My heart sank into my stomach, and I thought I was going to have a panic attack. I raced to my car to calm down, gather my crappy fear and wipe my tears.

Or the time I was just scrolling Facebook when a paralyzing wave of fear swept over me that was so intense. I'm reading on Facebook about a woman who had the SAME cancer as me, same size cm, same everything, and it's now spread to her lungs and bones only 6 short months later!  I'm terrified at the prospect of having it come back. It feels like a little black cloud forever over my head reminding me that it lurks there, and could return at any moment.

The doctors say we got it all, (they "practice" medicine after all) and yet I'm on a regimen of meds to keep it from coming back and watched for 5 years, as they prod me with hands, needles, scans and more every 3 months. I didn't so much as bat an eye going into that brutal and highly invasive surgery. I was ready. I was a warrior. They whacked off both my boobs and sent me home in less than 24 hours and I haven't regretted, not one time, choosing to go flat. . . . . . but that hasn't stopped crappy cancer from giving me crappy fear at the most awkward moments; sweeping down upon me without notice. My fears about cancer always manage to find ways to come back and haunt me, and with it, periods of depression that sometimes last for days along with periodic episodes of post traumatic stress that knocks me to the dark side as well.



My friends have told me that they couldn't possibly imagine what I've been through. My husband is the most understanding and supportive of anyone. Nobody berates me or beats me up for being fearful. So, why should I? I've decided to be kind to myself as well and never deny what I feel.  I think I've done that throughout the process, which is why I blog. I'm sure it has been "too much information" at times, but it's therapeutic for me. Crappy cancer is such a lonely and isolating experience.

Cancer stole from me

There's a plethora of dirty little secrets in breast cancer treatment that nobody tells you. My latest complaint. . . . . it switches off a woman's sexual desire. My crappy cancer was estrogen and progesterone positive, both hormones needed in your body for many reasons, but now my old body has neither. No hormones at all. So crappy cancer stole my desire. I've been on these meds for one month and it's either take them or risk the cancer coming back.

The limited research into this "problem" is to get women lubricated enough to tolerate sex, but that certainly doesn't address the vaginal atrophy from lack of hormones! I'm not a candidate for any hormones that will maintain the normality. Crappy cancer meds that I have to take for 5 years turned off the switch. I'm told there's nothing that can be done about that. And honestly, it's like having a sexual lobotomy.

It hurts that my desire for the person I love the most has been turned off by the lack of hormones. My heart is there, but my body rebels. A fundamental part of myself has disappeared! All the research I've read suggests including lubricants, or anti depressants- because of course it's all in my head. I'm urged to embrace my new normal, to find new ways of intimacy. And all I want is a hug, a glass of wine and sleep. Blessed sleep. A body without hormones has ZERO energy. The fatigue is getting worse (another crappy symptom) as are the muscle and body aches. Yesterday, I slept for 14 hours straight! I don't know if I'm willing to live like this for 5 years, so I'm faced with yet another decision about whether to stay on these stupid meds to prevent crappy cancer. 

I'm not the same person, and why would I be? The dry skin, peeling and chipping nails, hair thinning, bone and joint pain, muscle pain, headaches, hot flashes, insomnia, weakness, osteoporosis. . . . . are all just some other fun side affects. So, when you ask me, "What's wrong?" Just assume I'm dealing with one or all of the above. Cancer stole more from me besides my boobs. 

My "New Normal"

 

It dawned on me recently that I'm having to "reinvent" myself. We are all known mostly by what we do. In my lifetime, I've worked many jobs and I've even had a few good careers....mostly as a business owner having owned 4 businesses. My latest profession  came to an abrupt halt when I lost my job after 18 years as a victim of bankruptcy. I owned a management company and the corporation that hired me lost everything, so I was out in the cold, as were my 12 employees.

I look back on that, and as hard as it was, it turned into a blessing. The property has since been sold on the auction block and is deteriorating and failing. I don't miss the long hours, working weekends, and time away from my family! Life takes different turns, twists and bumps in the road. My husband and I adopted internationally, and I was available to go through that process. Crappy Cancer struck my mother right after that, for the second time, and I was available to help her.  Then crappy cancer reared it's ugly head again and I was diagnosed with breast cancer. OK. . . . . another "blip" in this journey on earth!


After my diagnosis of breast cancer and the subsequent bilateral mastectomy, I didn’t think it was such a bold move to make the decision to stay flat with no reconstruction. For me, it was the only move. I am somewhat OCD, so I researched a LOT. I had breast fed my girls; the mammaries had served their purpose. I didn’t want to go through additional and unnecessary surgeries or medical treatments; and I was adamant about not having anything else foreign put back into my chest. My identity was not wrapped up in my breasts. However, I encountered some weird reactions regarding my decision when I shared it with others.

After my operation, people who knew me BC (before cancer) - and also some of those who had just heard about my story - responded in a number of ways that ranged from support, compassion, and astonishment in the positive “you are brave” sense, to sadness, shock or just no reaction at all. It’s an unfortunate reality that every day, women around the world are diagnosed with breast cancer; the stats stand now at 1 out of every 7 women. . . . . which is a huge number of women from all different ages, backgrounds, cultures, and walks of life who are thrust into making life-changing decisions that will affect them emotionally and physically for the rest of their lives. Many of them will face the tough question of whether to have reconstruction after their mastectomy, so it is important for me to make clear that despite my personal choice, I am not against breast reconstruction. Every woman must make the choices that are best for HER.

One of my nurse's told me she had reconstruction because her husband wanted it! Really? Why would he force her into doing a surgery that she didn't want? I'm an admin on one of the social media sites for women who chose to go flat and it breaks my heart when I read about husbands and boyfriends who leave them because they chose no reconstruction. So, he only loved her breasts? I have a hard time understanding this. Please . . . . . I'd like to ask that everyone refrain from placing any unnecessary and unfair pressure on a woman fighting this crappy disease, and instead to recognize her right to decide how her body looks, and to celebrate with all of us our beauty and qualities regardless of our shape.


I want to say to my pink sisters that's it's OK to make whatever decision that you want. It's NOT okay to be put under any kind of external pressure from your spouse, family members, or friends as you are going through the emotional and physical experience of battling this crappy cancer. It is your body, and therefore, your decision to make!  I’ve definitely made the right one for me. It's been 8 months. I've recovered nicely and pretty much back to doing the things I enjoy. I'm not normal of course; it's my NEW normal. I'm OK with that.
 

Sharing

I absolutely love this letter and wanted to share.

AN OPEN LETTER TO MY PATIENT ON THE DAY OF HER MASTECTOMY

October 16, 2013

Hello, Dear.

Today is the day. I am a member of the surgical team who will take care of you -- the team that will remove your breast to treat the cancer that has tried to make a home in your body. We all have our role today, and the world would see yours to be the "patient."

 I see it as something more: a powerful gift to us.

Because you remind us why we do what we do.

Today will feel sterile and scary. And I am sorry for that.

I wish there were a better way. Today we will ask you to take all your clothes off and put in their place a gown. Women before you have worn it. Women after you will wear it. Be sure to ask for warm blankets, because we always have plenty. We will ask of you your blood type, your medical history, your allergies. We will ask you to lie down in a bed that's foreign to you. We will have to poke you so that we can start an IV.

You will meet many nurses, doctors, and hospital employees. We will write down important things for you to know. Your surgeon will see you soon. He will have to mark the breast we are having to remove today.

We will take you into the Operating Room -- a room only few have seen. There will be bright lights, lots of metal, instruments that you've never seen, and we will be dressed in gowns, gloves, and masks. Over our masks, we hope you can see our eyes reassuring you as you go off to sleep.

Today is the day you will have to say goodbye to a part of your body, a part of yourself.

Your breast has felt the warmth of a lover's caress, has fed your child with life-sustaining milk and connection. You have many memories stored in your breast, stories none of us today know about. Somehow I wish I knew them.

And yet. Here we are. We must do our rituals. We must scrub our arms and hands with alcohol so that we can fight off infection before we start. We don our gowns, our gloves, our masks. We must drape your body in blue.

You are exposed. And unconscious. And it must be difficult to trust. I honor you, Dear One.

My job is to help your surgeon take away the cancer. I get a bird's eye view of the process. The surgery begins and I feel your warm skin through my gloves. I wonder what stories you already have and the ones that are yet to come.

We carefully remove your breast. It never gets easy to see or to do. You must know this. It never feels natural, it never feels cavalier. It feels sacred to me. Every. Single. Time.

I look down and see your pectoralis major --- the big muscle behind your breast. A source of strength. It is beautiful and shiny. Sometimes it contracts a little bit while we work. Sometimes the muscle is bright red and young. Sometimes the muscle is faded a little. But it is always strong. I like to gently touch it withmy fingers. Because I feel your strength there.

We must send your breast away now. It officially leaves your body. I always feel an ache in my gut in that moment. There is no way for you to fully prepare for this day, Dear One.

I like to think that your body is already healing, as we close the incision we had to make.

Sewing your skin back together feels like I'm helping a little. But I know it's actually all youdoing the work. Even as you sleep, Dear One.

We will put a bandage on your incision. We will wake you up. We will tell you everything went well. But the road is just beginning for you.

I saw you today.

You are beautiful.

You are strong.

Thank you for entrusting me and my colleagues with your most intimate moments. I am honored to be a witness to this phase of your life.

Because now the healing begins. Now the grief is in full force. Now your breast is gone and in its place is a memory.

I watch you as you wake up. And I want to make it all go away. I can't. Today your body underwent a transformation. And today our team took care of your body. I hope we took care of your heart, too.

There is nothing we can say or do to make it go away. But please know that I care. We care.Behind our masks and gowns are heavy hearts and sometimes tears.

Yours are a gift today. Because you remind us of human resilience. You remind us of strength. You remind us of trust.

I saw you today.

You are beautiful.

You are strong.

I will not forget.

---Niki, your Nurse Practitioner First Assistant on the Surgical Team

Copyright © 2013-2016 Nicole Flemmer, MN, ARNP/FNP-C, CNOR for The We Belong Project.

Buddha Belly

I can see my belly! Which blocks the view of my feet! Dang! My boobs used to block that view looking down. My figure is disfigured! I'm shaped weird. I actually don't miss my boobs, but I sure would like to get rid of this buddha belly. Unfortunately, the belly stores fat as "energy". . . . . and I don't have a lot of energy!

Hot flashes, hair loss, joint/bone/muscle pain, FATIGUE, unusual sweating and temperature changes, nausea, dizziness, anxiety, mood swings (it's hard to explain, but they just slap me suddenly into a funk) and trouble sleeping. These are all side affects of the darn meds I'm on. Fibromyalgia and hypothyroidism kicked my health to the curb a couple years before crappy cancer came along. The meds for those caused weight gain. Now, I'm dealing with all the side affects of the multiple drugs I'm on and I'm shaped like Pooh. See the flat chest and round belly? Yep, that's me! POOH!

My biggest complaint so far is the extreme fatigue. Yes, my joints hurt and I have frequent temperature changes along with restless nights and all the other affects. But I just don't want to be this deep down, bone weary, TIRED for 5 years! Is it the hormone treatment or lack of estrogen? Who knows. All I want to do is sleep, but I usually cannot. I fight anxiety to almost the point of an attack. I hate being around a lot of people. I'd rather just stay home all the time, but I force myself to get back into the world and "show up." It's not easy. And some days I just can't.

I've made a five year commitment. . . . . and it kinda fills me with rage just a tiny bit. I don't want to think (worry) about crappy cancer for the next 5+ years, but I will every time I take that tiny pill.

In the meantime, I'm trying to stay busy so I don't just sit or lay down and do nothing. Staying busy, along with a healthier diet, gives me hope that the buddha belly will somewhat level out. I'm turning 60 this year, and the metabolism is slowing down. My health has deteriorated more than I'd like at this age.

I can't believe how much my life has changed. I'm not the same person I was before crappy cancer. In many ways, I'm more thankful, thoughtful, kinder, and more appreciative. More spiritual. In other ways, I'm more sad, depressed, scared, and just . . . . .different! I look different and I feel different. I'm a survivor and I'm different. But, hey, I'm alive. Buddha belly and all!

Sugar Shakedown

…..sigh…this coming from the woman who loves sweets, and in fact craves sweets, and an occasional glass of wine.

The fact is, alcohol is a known cause of cancers of the mouth, throat (pharynx), voice box (larynx), esophagus, liver, colon, rectum, and breast. It may also increase risk of cancer of the pancreas. It is not known exactly HOW drinking alcohol leads to cancer, but there is a definite link. Researchers from the Boston University School of Medicine and Boston University School of Public Health have shown that alcohol is a major contributor to cancer deaths. These findings, published in the April 2013 issue of the American Journal of Public Health, show that alcohol is a carcinogen, even when consumed in small amounts. Therefore reducing or eliminating alcohol consumption is an important cancer prevention strategy.

Two simple facts: alcohol and sodas are high in sugar or artificial sweeteners, and they contain zero nutrients. It is a known fact that cancer LOVES sugar! Cancer cells consume anywhere from ten to fifty times more glucose than normal cells do! So in fact, when you feed your body sugar, you are actually feeding cancer cells. . . . . kinda makes you want to give up sweets, huh? 

Excess soda can also lead to weight gain, which is another risk factor for cancer. If you think that switching to diet soda is better, think again. Diet soda drinkers have twice the amount of obesity than the general population. Artificial sweeteners are no better than sugar.  In fact, they are toxic. They are up to 100 times sweeter than real sugar, which blunts the taste of nature’s sugar, such as that found in fruit. They also increase the craving for sugar since the brain has receptors designed for sugar that do not accept the artificial substitute. Don’t be fooled by drinks that tout “all natural flavors”, since these natural flavors are actually Monosodium Glutamate (MSG) in disguise! MSG is a neurotoxin that is hidden in many foods, under many different labels, including “natural flavors”. While there is no direct link between MSG and cancer, it has been linked to brain lesions, neuro-endocrine disorders, and neuro-degenerative disease, such as Parkinson’s and Alzheimer’s.

Sugar suppresses a key immune response known as phagocytosis – the Pac-Man effect of the immune system.  Consuming 10 teaspoons of sugar can cause about a 50% reduction in phagocytosis.   If you consider the sugar in your cereal, the syrup on your waffles and pancakes, the sugar added to your morning coffee or tea, the sugar in cold beverages like iced tea or lemonade, the HFCS in prepared foods, salad dressing and ketchup, and of course sugary snacks and desserts, you can see how easy it is to suppress your immune systems significantly. 

Not only the amount of sugar, but also the frequency of ingesting sugar is relevant to immune function. In one study, research subjects were found to have nearly a 38% decrease in phagocytosis one hour after ingesting a moderate amount of sugar. Two hours later, the immune system was suppressed 44%; immune function did not recover completely for a full five hours. So, it lowers your immune system, which a cancer patient does NOT need!

When sugar in any form is consumed, the pancreas releases insulin.  Breast tissue, for example, contains insulin receptors, and insulin is a powerful stimulant of cell growth.  One group of Australian researchers concluded that high levels of insulin and insulin-like growth factor (IGF) may actually be causative of cancers of the breast, prostate, endometrium and pancreas. A broad study conducted in 21 countries in Europe, North America and Asia concluded that sugar intake is a strong risk factor contributing to higher breast cancer rates, particularly in older women. A four-year study at the National Institute of Public Health and Environmental Protection in the Netherlands compared 111 biliary tract cancer patients with 480 healthy controls. Sugar intake was associated with more than double the cancer risk!!!

And here's another thing: Humans are the only mammals on the planet who consume the milk of another mammal! We are not baby cows and our bodies were not designed to drink a beverage that nature intended to make calves gain hundreds of pounds in a matter of months! Whether or not dairy causes or promotes cancer is still open to debate. The fact is, factory farms inject their cattle with a substance called IGF-1, which has been linked to cancer. In addition, in order to keep them producing milk, cows are also injected with estrogen, which we know feeds hormonal cancers, such as breast cancer. Since the type of cancer that I had was estrogen fed, I'm supposed to avoid dairy like the plague! So, those late night bowls of cereal are just a memory. 

Scientists have found that sugar is addictive and stimulates the same pleasure centers of the brain as cocaine or heroin. Just like those hard-core drugs, getting off sugar leads to withdrawal and cravings, requiring an actual detox process to wean a body from.

So basically, I'm addicted. Sugar is my drug and I'm having a very difficult time giving it up. I crave it!  I want to remain cancer free, and I really want to cut out the sugar as much as possible, but I fail miserably. The craving becomes too great and I cheat. Sugar Shakedown. . . . . . It's a process.

What have I Become?

I have not become more reasonable, less stubborn, less angry, or more patient.

Stubbornness, anger, and impatience are my biggest personality flaws, and they have just been exacerbated by cancer. Especially impatience. Somewhere deep inside me, I'm scared about the amount of time I have left. I value time. It has become precious. There's not enough. Crappy cancer stole some of it. It continues to steal time as I recover and go through treatment.

I'm different. On the outside and the inside. My figure is distorted. My personality is distorted. It seems I've developed new flaws, and old flaws have reared their ugly heads. What have I become?

I've always been brave, string willed, never shy or afraid of crowds. I've always been a leader. Now, I'm content to stay home. Crowds make me nervous. I'm experiencing anxiety. I'm told cancer patients get PTSD but I feel that's too strong a description and totally unfair to our soldiers. . . . . and yet, I'm not the same. What have I become?

Crappy cancer is forever a black cloud hanging over me. Blood tests every three months, lots of doctor visits, treatments, scans and more for at least the next five years. Will it come back? Probably. Breast cancer usually does. The battle never ends.

How we go into this battle with crappy cancer is as individual as we are. There is no right or wrong, proper or improper way. If you run in with a cape and a sword screaming war cries, and it works for you, it's the right way. If you walk in boldly being led by God and a bible, or a rosary and holy oil in your pocket; if it works for you, it is the right way. If you must be dragged into the fight with knees knocking, tears streaming and heart racing, but it gets you through, it is the right way. The pink cancer warrior suit comes in one size fits all! How we slay crappy cancer doesn't matter, as long as we slay. Right?

I have found that each day can bring about a change in my emotional response. It's a roller coaster. Sometimes all I can do is roll with the emotional tide. Some days I just survive the day. Some days I soar bravely with my cancer, and sometimes I am face down in my tears, but my suit is still as pink as it was the day I put it on and decided to fight.

Ponder with me the many emotional responses through crappy breast cancer:

Denial and Shock - "This can't be true." "How did this happen? "

Anger, Rage - "This isn't fair." "I never took hormones."

Stress and Depression - "I don't have time to deal with this." "I feel so sad." "How bad is it?"

Grief and Fear - "I'm not ready to die." "I'm going to lose part of my body." "What if it's spread?"

Acceptance, Adjustment - "Okay, it's true. I've got breast cancer, but I don't have to like it." "Let's just do this and get these boobs off NOW."

Fight and Hope - "I'm going to be brave and beat this!" "I'm going to research and understand every bit of this crap."

Concern about disfigurement – "After surgery, what will I look like?" "What will happen to my sex life?" "How will my clothes fit?"

Fear of the unknown – "What happens next?" "What treatment will I get?" "How long will it take to recover?"

Worry about side effects – "I don't like what I'm reading and hearing." "How is this going to affect my quality of life?"

Anxiety - "How do I know if the therapy works?" "What if it comes back?"

Family Concerns - "How is this affecting my family?" "Will my daughter's get this too?" "I don't want to scare my grand-kids."

Fear of Recurrence - "Will my cancer return?" "Will it spread?" "Is that pain I'm feeling or just a pulled muscle, or could it be my cancer has returned? Where will it come back at?" "How will I know?"

Feeling Vulnerable - "How do I guard my health and what do I need to change to take better care of myself?" "What if I do something that causes it to come back or spread?"

Fear of Continued Pain - "My chest is sore." "I'm exhausted." "Will I ever feel normal again?"

Fear of Death - "My family needs me. I'm not prepared for this."

Yep. Crappy cancer has taken me through all these emotions several times. I'm tired. So tired. I want off this roller coaster ride, but it just got started. I don't like what I've become. I miss the old me. . . . . The confident gal before crappy cancer changed her.

What have I become? Well, for now, I'm still evolving. It's my 3 month cancer-versary since my boobs were whacked off. So, I'll give myself a break. It's too soon to know what I'll become.