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.