I received my post surgical biopsy report yesterday and much to my surprise it was inconclusive. It stated that the specimen did not survive processing. Of course this was very disturbing to learn. I have since learned that this occurs for various reasons, not always within human control. I have to believe that my doctor’s initial observation of a herniated muscle causing the lump is correct. I just cannot subject myself to additional surgery right now, and continued surveillance will be vigilant of course. This is where my faith rubber hits the reality road, for sure!! My follow up appointment is in another week.
I’ve been trying to put into words where my mind is now, 2 1/2 years after a breast cancer diagnosis. You would think that by now I would have “moved on” or returned to life as it once was, “normal”. So why hasn’t that happened? I am often asked in my counseling work, how long it takes for life to feel normal again and I must say, I personally have not found that “place”. Sometimes you hear it referred to as “the NEW normal”, but that is kind of misleading because it doesn’t feel like it should feel and “normal” feels out of reach, somehow. Last week I laid in bed, ready to fall asleep but I wasn’t asleep yet. There in the dark of night, my mind wandered. I have no idea what brought on the thought, but there I was, in the operating room the morning of my breast surgery and it felt every bit as real as it did on that day. I had just been through a very painful, torturous node biopsy injection of dye, where I laid fully awake, with no anesthetic (that was the protocol at the time, believe it or not – not so anymore), and now here I was in the O.R. prep room having a nurse attempt for the third time to start an IV on me, yet blowing my veins out at every try. I was shaking in pain and fear. I could not believe that within just minutes I was going to be rolled into surgery where I was forever to be maimed. How could they not even get this simple step right? I remember the look that my husband gave them, “Enough you people. Can’t you see she has been put through hell already?” and within seconds they gave me an injection of a sedative. That was when tears began rolling down my cheeks to my pillow. I knew in that moment that I am experiencing post traumatic stress. I re-live the events of two years ago and they are clear as day in my memories. Why can’t I just say to myself that the cancer is gone and I can go back to my old life? Because no doctor will tell me that I am cancer free and no doctor will say that I have been cured. I can only liken it to what soldier must go through when he returns from war. His family is so happy he emerged alive and safe, but in his “world”, the world of war, terror reigns and fear is a familiar voice in the back of his mind whispering “watch out – I’m gonna get you!” It’s as if I’ve returned from my war, the war on cancer, with the enemy in my back pocket – just waiting for his chance to come back and attack. When you’ve been attacked once, you never let it go. You never forget. Ever on guard, always the strategist, aware on a daily basis of every possible change in your body, every ache, pain, – it changes you. Survivors told me this when I was first told that I had breast cancer, but I had no idea what that meant – it will change you. You’ll hear soldiers return from the Middle East and say the same thing. It changes you. How can it not? And those who have never been through an attack, can’t seem to understand, and with that the survivor feels a distance from even those whom she loves. No wonder military soldiers ask to be returned to their brothers in arms. Coming home is difficult. Re-joining society after an experience like this feels empty and foreign. Only other survivors seem to feel your pain and loss. When I was growing up, my father always answered our front door with his gun in his back pocket. It wasn’t as if we lived in a bad neighborhood. We didn’t. We were the upper middle class Americana, where kids played hide and seek until late at night in their yards, and we had annual Christmas potluck parties with all the neighbors. But our home had been broken into once by a burgler when we were away from home, and ever since that experience my dad has never let his guard down. Even now. Even forty years later he is aware that the enemy’s attack is just one broken window away from becoming … a bad reality. Isn’t that what terror is after all? The fear of a very bad reality.
“No evidence of disease, or NED, is the new ‘remission”. But there is no cure for cancer and a certain percentage of cancers will recur, and nobody really knows if it will happen to them. Statistics get thrown around, charts and studies would conclude that the odds are in my favor of remaining NED, but there are no guarantees as we would all hope for. Such a guarantee is just out of reach. If it were, then I could stop thinking about it on a daily basis and we could all just leave Cancerland behind us.
I woke up the other day and thought to myself, what if I just didn’t talk about breast cancer anymore. What if I stopped going to support groups, stopped visit the oncologist, stopped hanging out with fellow survivors for coffee and lunch dates, WHAT IF I JUST QUIT CANCER? Maybe THAT is what would get me to move further along up the road. I’ve learned of plenty of people who did just that. They never spoke of it again, and they went on in their lives and stopped identifying themselves as survivors. But then later in the week I was working the volunteer hotline and took a phone call from a woman who has stage 4 breast cancer which has spread to her bones. She really needed someone. I found it hard to relate to a lot of what she is going through, but then we found the common bond of our faith, and it was there that I realized my BEING here in Cancer is for women like her. Women who need a ray of hope. A hand of compassion. There is a sisterhood here that few can understand. I know that when I was in my darkest hour I needed the survivors whom I met and became my friends. I needed the help of those who had gone before me and came out the other side, happy and healthy. I needed them like others need me now and so I guess I won’t be “quiting” cancer anytime soon.
This was the word I received from my oncologist in a phone call today. Last week’s CT scan of my right lung noted no changes (or growth) to the nodule seen in March, and they want to re-scan it again in 6 months. An enlarged lymph node was noted as well. I guess I am suppose to feel relieved….”satisfied”….but somehow I feel, well, in limbo. Like I am waiting for a bomb to drop. They wouldn’t give me the “all clear”…And maybe this feeling comes from having been through cancer and having a bomb dropped on me once before, without warning, without symptoms, vulnerable and scared. A post traumatic stress disorder, of sorts. Always feeling like I must remain on guard. Always on watch. Terrified of it coming back again, terrified of it killing me. I’ve probably read w-a-y too many stories and heard far too many unfavorable outcomes, and so it’s easy to let myself fear the worst, but then I must remind myself that all too often its not the good outcome stories we hear about or the stories of triumph and survival, and I know there are far more of those than not . But for the time being I must be satisfied with this result and consider it as my doctor said, “good news”. 🙂 I am taking an oral anti-cancer drug now which is suppose to starve off any lingering cancer cells that might try to grow, and I take this drug for the next 5 years so I am doing everything within my power to stay cancer free. That is all I can do. “Give it up to God” what I can’t do, as my son says! Besides, there’s nothing telling us this that this nodule is cancerous, unless it starts to grow, and so that is what they keep checking.
This coming weekend that son, Keith, graduates from high school and leaves 2 days later to work at Young Life camp at US Army Camp Darby, Italy, on crew along with a couple hundred other staffers. We are busy getting him packed up and ready to be away for a month. Needless to say he is a wee bit excited!
Fathers Day orders poured in last week and I have been busily stamping up my projects and trying to stay afloat! This, plus making plans for Tim’s retirement and booking all of the details for our England/Ireland trip give me little time for fretting! Now to go to a cupcake!
Here is a great song about how I know one can get through trials of any kind. It is called “I Get On My Knees”. It’s called prayer…crying out to the heart of God…take a listen! If you can’t see the embed video, click here . “Cuz I’ve learned in laughter or in pain, how to SURVIVE! I get on my knees!”
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The training has begun! I am walking an average of 3.5 miles a day to prepare for the Avon Walk that I will be doing in just 6 months. The fall foliage and cooler days makes this an enjoyable activity and I also frequent the gym for additional weight lifting and endurance work outs. I held a fund raising event at the breast care center at Walter Reed Army Medical Center last week and raised 8% of my goal by selling my jewelry creations. So far I am at nearly 30% raised so I continue pressing on with those efforts a little bit every day. Thank you to all who have donated so far! My Avon Walk page can be viewed HERE.
This week my MRI results came back all clear so that was good news! I must admit I held my breath for those 8 days waiting for results. I am told that this feeling of dread lasts a long time, at least until the ten-year survival point. Even then, with no cure for breast cancer, the fear of recurrence looms all the time. The MRSA infection in my arm continues to heal well and is down to a dime-sized scab with some scarring.
In the meantime I celebrate LIFE and help those newly diagnosed whom I meet, which seems to be nearly every week. The numbers of women affected by this disease never ceases to amaze me. Giving them hope and support gives me a reason to continue fighting for a cure.
I finished my 25th infusion of Herceptin yesterday and have just 5 more to go now before completion, just before Christmas. Then I will officially be done with one year of chemo therapy! While at the hospital, I got to meet with my new oncologist. This new doctor is actually the head of oncology at Walter Reed, and has agreed to take me on as his patient. I had begun an oral chemo medication in May, designed to block the hormone receptors which feed breast cancer, but I developed a reaction to it in the form of daily hives. After meeting with the doctor yesterday, I am no longer taking the medication and he sees no reason for me to take anything else orally. Because chemo therapy put me into early menopause and I am no longer producing the volume of hormones that I was prior to my surgery, he feels that I am not susceptible to the hormones feeding any rogue cancer cells. He feels that with the chemo therapy and Herceptin which I have been given, I have every possible chance of remaining cancer free. This was very good news to me, since the oral therapies given women after breast cancer carry with them some undesirable side effects and risky complications. My doctor believes this is mostly because the field of oncology just doesn’t know what else to do, and the fact that other than Herceptin, there have been no ground breaking breast cancer treatments in the last 30 years. We are still using surgery, chemo therapy, radiation and oral hormone blockers to fight recurrence. Despite all of this, women continue to get new breast cancers at epic proportions. I am reading and researching what are believed to be the major causes of breast cancer and find it interesting that so much is directed at funding the pharmacuetical companies and their studies but NOT determining and fighting the causes, namely hormones. That would put a lot of big name manufacturers out of business. Unfortunately beating cancer is very political and financial.
At any rate, I am feeling great and doing well, and look forward to celebrating my one year survival point next month! In celebration, I bought myself a new kayak last week! I loaded her up last weekend and went with a girlfriend out on the water Saturday! I call her MY SURVIVOR”SHIP“ ! Now, you may be wondering how I got that 42 pound boat up there all by myself while Tim was out of town? With much determination! Where there’s a will, there’s a way, and I don’t let much stop me anymore…that is one positive outcome in my fighting cancer – I have a new-found strength within. (In case you’re wondering, I bought Tim a matching kayak too.) Now when our local marina closes for the season at the end of September, we can still get out on the water and explore the local rivers during peak fall foliage! The leaves are already beginning to fall here in Virginia!
I loved what a new friend had recorded on her home answering machine the other day. After the usual message of “leave a message at the sound of the beep”, she reminded me of this:
The hand of God will not bring you to any trial where the grace of God will not protect you!
Today is June 1st, 8 months since my breast cancer diagnosis. Sometimes it seems a lifetime ago and sometimes it seems like just yesterday. Some days I feel I have survived the worst of it and then some days I feel like I am still fighting. I have met many breast cancer patients and have found that some call themselves ‘survivors’ from their date of diagnosis and some from the date of their surgery. I don’t know when I will call myself a true survivor. All I know is that I don’t feel like one just yet.
Maybe that’s because I am still going through IV infusion treatment, spending the day in the chemo ward every 3 weeks, and maybe that’s because I still have very little hair at all, and my fingernails and toenails are rotting, bleeding, and falling off. ( Gross, I know, but that’s the raw truth.) I escaped to a movie theater a few days ago and got engrossed in the show, forgetting for three hours that I had breast cancer, only to go to the restroom after wards and find blood on my shirt from my bleeding fingernail. I wrap band aids around them and try to keep them on. “This part is taking too long”, I think to myself, this part of regaining my body after chemo therapy. And even the therapy I am getting now, though not as toxic as the last four and a half months, still causes me headaches and fatigue and I am scheduled for nuclear heart scans every 120 days to check for cardiomyopathy, a side effect to the drug Herceptin, which I get every 21 days.
(Tim and me, out to dinner last weekend, with his parents who came to visit from St.Louis)
On a lighter note, though, I was traveling back from California a couple of weeks ago and in the airport magazine/book store the clerk said to me, “I love your hair color! It is really nice with your brown eyes.” I smiled and then leaned over to her and said, “I have a dirty little secret to tell you”…and then I told her about my wig and breast cancer.
I thought to myself, I could say “thank you” and go about my business, or I could put a face to breast cancer and let people know that it is not your great aunt’s disease anymore. It is affecting more women than ever before, in staggering numbers and to people whom you never would have suspected. Many celebrities have hidden it from the public until now. The risk factors are becoming more widely advertised and discovered by scientists.
I don’t know what my life after breast cancer treatment will look like, but right now it includes a desire to let people know that finding a cure, though a great hope for us all, is only one piece in a very larger puzzle of finding the cause. The more I read, the more I see how our society and foods, and lifestyles play a big role. Now if I could only get myself to make some of the changes that will reduce my risk of recurrence such as daily exercise and eating a large diet of fresh fruits and vegetables! I’d better get off this computer now, and put on my walkin’ shoes!!
If you, like me, have been brought to the depths, and if you have, then you know what I mean…a place where you can cry no more, and have no strength left within your being. It is a dark place, a hard place and a place you never want to stay long. If you have been there or are there now, then you are at The Point of Grace – the place where only God can lift you out. I found myself there six months ago when a plan for treatment was not yet in place, and I find myself there now as I try to navigate a road to recovery that isn’t clear. It’s as if I was placed in a blender and then poured out on the pavement and left to wander, trying to find myself again. Where is my femininity? What is my purpose in all of this mess? How do I come to a point of acceptance when I am still so angry? Even my fingernails are peeling off now and are painful!
If you feel that way in your life, then you’ll hear these words to this song and know that there is hope and peace waiting for you. You just have to let God find you there. No hiding from your reality. I heard this song while I was in California visiting my parents. I felt the tears flowing down my cheeks and they streamed like a cleansing river to my soul. Just when I thought I couldn’t cry any more…
Six more days until the biopsy. This must be the worst part. The not knowing…the worrying. I feel shooting sensations in my breast. I have had them for the past several months but sort of ignored it and figured they would tell me at my annual if I needed to worry about that. It’s a constant reminder of what’s to come, although, even that I don’t really know what to expect WILL come. I think about all sort sof things. I think about what I will say if they tell me its benign. I think of what I’ll do if they tell me it’s not. I think of what I’ll tell my children and I think of what my breast will look like if they have to operate on it in any way. I think to myself that it is all very strange that I decided in April that I would not return to work this fall and, everyone seemed so puzzled as to why I would do that! After all, I loved my job! I wanted to stay home full time and build my business and clean my house, I told myself. And really, it was the truth! But now I wonder if God has something else in the works for me and He was opening my schedule to make room for it. I could let my mind get carried away with this thing and I am trying really hard not to. My gynecologist called last week so I could talk to her about my test results and she seemed very guarded in her answers and said that this shouild feinately be explored. She also said (twice) “You’ll be in my prayers”. Why would she say that? I found it very odd. Did she read something ominous in the report? I wish knew for sure. Well on a lighter note, isn’t this butterfly pretty? I took this photo this Labor Day weekend when my husband and I went away for the night and stopped by an orchard on our way home from Pennsylvania. It could be published in National Geographic, don’t ya think? This is a hobby I have long wanted to explore, photography, and with the purchase of a new fancy camera I am on my way!
Until next week…
Got the letter in the mail from the medical center’s radiology dept. yesterday, with the finding: “Possible malignancy – schedule biopsy through your surgeon”. Does everybody’s scare include a letter like that even if it turns out to be benign? There were about 10 choices with little boxes beside each one stating things like “Please retun for additional views as your films are not conclusive enough for a thorough reading”, or “looks like a benign nodule, call for follow up in 6 months”, etc…but mine was the very last box on the page. I felt like falling apart but I didn’t. I put the letter in my filing cabinet and shut the drawer. Don’t want my kids to see that. I guess I already knew the news, but this was the first time I’d seen that word…malignancy. It’s never had a good reputation.
It’s been about a month since I last posted to this blog. I’ve been very busy this summer with two college sons home and two high schoolers needing taxi service, and sharing a car with my husband while the kids are working. I’ve also been growing my jewelry business now that I have decided to be a full time stay at home mom (or shall I say Work At Home Mom). I moved my jewelry making studio into the dining room but that has begun to look cluttered and outa control, so I am moving it to the basement now in hopes of staying out of my family’s way.
Just before we left on our beach vacation I had my annual mammogram. I’ve had a lump before, but after being told many times not to worry, that it was nothing, and after realizing it hadn’t grown from its pea size in over 4 years, I honestly started to believe it was nothing and decided to put it off. I was now 4 months overdue for my mamogram, so off I went. They told me in two weeks I would receive the results, and handed me an envelope to address to myself so they could mail the results. Two weeks never came. Within just 3 days I had a phone call and they mailed a letter to me (neither of which I got until after reurning from vacation a week later!) to return for a diagnostic mammogram “They’ve found something” it said.
So this week I went for the smash- you- flatter- than- a- piece- of- paper test. (That other one was just a smash- you- flatter- than- a- pancake test! ) When I walked into the room , the technician placed my first films up on the light box to show me. “Here”, she said, “is what we are going after”, and she pointed to a white sort of starry “thing” in the center of my breast. “We need alternate views of this”, she said, “just to be sure it’s not just a reflection or film mistake”. I asked her if this was the pea sized lump I’d been feeling for years on my side, and she said no, this was behind the nipple. So I put on the gown and she took the films. After seeing stars from the painful procedure where they stretched my nipple to Kingdom Come, the technician sat me down and told me to wait to be sure the films turned out, and then after that I could leave. Soon she returned and told me that they needed to do an ultrasound. So down the halls we went to the ultrasound room where a doctor/radiologist did the scan. She took what seemed like a hundred shots and measurements of what appeared to be a gray blobby ball with folded, wrinkled edges, and when I asked her how big it was she said about an inch or the size of a quarter (except it isn’t flat). When all was done she told me they needed to biopsy it with a tissue biopsy to determine what it is. With a totally doctor sort of look on her face she told me they always hope that it is benign. No personality, this woman, just a serious, blank matter of fact look. Inside, I was feeling horror. “They’ll call you in 3 – 5 days to schedule your procedure.” The next day I thought to myself, why should I have to wait for THEM! So I called them up myself and am now scheduled 19 days from now for a tissue biopsy where they make a 1/4 inch incision and use a proble to extract tissue. Then, they’ll take more films (ouch!) Sounds lovely doesn’t it? The part where she told me they’ll “Numb you deeply” is the real part that makes my skin crawl!
So here I am waiting and wondering to myself if this is what the warm , burning sensation I’ve been feeling for months in my breast is, and kicking myself that I hadn’t gotten it checked sooner, and what are they going to tell me in 3 weeks? I’m angry that doctors for years have told me that a family history that goes back 3 generations to two great-great-aunt’s deaths from breast cancer at 44 & 46 years of age, but skipped the last two generations, means nothing at all. And maybe it doesn’t, but what if it DOES matter? Angry at myself for putting things off. Angry at that matter of fact doctor who has NO business working with women in medicine because she has no heart…I’m just angry right now. Maybe I have no reason to be, and maybe it really is nothing at all but whatever it is, it’s going to have to come OUT!? That can’t be fun,now, can it!?
I shared all of this that very same day with my best friend, because after calling your mom and your sister, that is the first thing you do after getting news like that! She told me she’d been fighting with her clinic for months (6 months) to get her diagnostic mammogram which her nurse practioner prescribed, and that everyone kept giving her the run around because it didn’t come from a “real” doctor, and she had finally thrown up her hands and just said forget it. I’ll wait until next year when I can request a “real” doctor. Now, she says she’s not waiting. I hope that if you’re reading this and putting it off for yourself, that you won’t either.
It worked for me and I hope it works for you. Check out Works For Me Wednesdays at Rocks in my dryer!