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.
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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

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.