Monday, July 17, 2017

When is it time to find a new oncologist?

When the mail came and I found an envelope from my oncologist’s office, I felt fear rising in my chest. A knot developed in my throat as I slid my finger underneath the pre-moistened flap of the long, white envelope. Sliding my finger along the flap, I held my breath until the letter was finally opened. As I withdrew the enclosed letter, I braced. I had no idea why I was receiving any form of written communication from my doctor. I hadn’t had any recent blood work or other tests. I began to read the letter and was instantly put at ease. It was just a standard letter. My upcoming appointment had been canceled. I needed to call the office and reschedule. I wondered why. I’d made the appointment several months earlier with the scheduling clerk. She’d offered me that specific date and time.  

At first, I wanted to give my doctor the benefit of the doubt. Maybe he’d had a surgery scheduled that he’d forgotten, or perhaps he’d been called out of town on a conference. Maybe his wife wanted to go on a family vacation. Then, I remembered this was not the first time I’d received a rescheduling letter in the mail. This was actually the third time in several months. I wondered why they didn’t just try to call me, like most of my physicians did when they needed to change my appointment time or date. The more I thought about the letter in my hand, the more I realized things hadn’t been quite right with my doctor for some time.

I noticed it almost immediately after I was diagnosed. When I refused chemotherapy, my doctor seemed to become closed toward me. Although I explained I wanted to conquer my cancer as naturally as possible and avoid conventional treatment as much as I could; he seemed disinterested in me. Each visit after my initial diagnosis seemed extremely uncomfortable. The doctor barely spoke to me and only spent a few minutes of time with me. I chalked it up to a busy practice with many patients scheduled each day. So when I saw him, I tried to get straight to the point and not take up his valuable time. One of my friends suggested that perhaps he wasn’t pleased with me because I had decided not to take the anti-hormone therapy. She even said some doctors take kickbacks from pharmaceutical companies though they’re not supposed to do that. I didn’t want to believe he’d stoop that low, but I just didn’t know.

When I discovered a small, grape sized lump in my side, I made a mental note to bring it to my doctor’s attention. On my next visit, I asked him to feel it and let me know if I should be concerned. He lightly rubbed his hand across my abdomen and said he didn’t feel anything. The lump was palpable even to my untrained fingers. There were several incidents afterward that caused me to wonder if perhaps my doctor was losing interest in me. He’d slip out of the room to have a personal conversation on his cell phone. He’d pay more attention to his watch as I talked than he’d give to me. I didn’t understand why the sudden shift in interest. When I first began to see him, he seemed so kind and caring. I wondered if it was because I’d voiced concerns over my regimen of care. I hadn’t ever dismissed his suggestions and always deferred to his medical expertise, but I did explain my desire to avoid any unnecessary side effects along the way. That was why I’d refused chemotherapy and had stopped taking the Aromasin, Arimidex, and Tamoxifen after several months.  I wondered if maybe he thought I didn’t want or need his help but I’d never missed an appointment or scheduled test. I’d always respected and listened carefully to him.

I talked the situation over with my husband and explained how I’d noticed a decline in my relationship with the doctor over the past three years. He suggested I look for another oncologist and advised that I needed a doctor who was genuinely interested in my health care. If I felt uncomfortable with my current doctor and didn’t feel the freedom to discuss things with him, it was time to move on. I’d never given this option a thought. I assumed when you began treatment with an oncologist you were with them for the duration. After all, this wasn’t a minor health care issue. This was a lifelong illness. So I promised I’d consider it and I began looking.

The first concern I had in seeking a new oncologist was wondering if he’d accept a patient not currently in active treatment. Would an oncologist take on someone like me who seemed to be in remission and might just need to come in for periodic “tune-up” scans? The first thing I needed to do was make a list of potential doctors. Next, I’d have to check with my insurance company and make sure the doctor I was considering was “in network” under my plan. If he was not, I’d have to keep checking until I found one who was on my plan. After finding a new oncologist, I’d need to check credentials. I preferred a board certified oncologist. It was important to me to find a doctor who’d been practicing for a number of years, one with a good reputation, and one with  a good education. The most important requirement for me was to find an approachable doctor with a good bedside manner. I wanted a doctor who would not only listen to what I had to say but hear what I wasn’t saying. Was it too much to ask that I could feel comfortable enough around him to consider him a friend? This was going to be a long term relationship. I also needed him to talk to me in a way that I could understand. I didn’t want to be afraid to ask him questions. The more I thought about all the things I needed and wanted in a new oncologist, the more I realized I didn’t have any of those things with my current doctor.

I made the first step today.  I called our new cancer treatment center. It’s within ten miles of my home. I wasn’t able to speak to a human but I did leave a voicemail. If I can find a new oncologist, the next step will be transferring all of my medical records. With access to most digital files online, it shouldn’t be much of a problem. I’m nervous about forging ahead but feel like I need to do what’s best for my medical care. A doctor with an attitude of indifference doesn’t make me feel very confident. I think my husband’s right, it’s time for a change.

Sunday, July 9, 2017

Happy 3rd Cancerversary to me!

It's been 1096 days since I was first diagnosed with breast cancer. Today is my third cancerversary and it's hard to believe it's been three years since I was diagnosed with Stage IIB Invasive Ductal Carcinoma.

We celebrated early (yesterday) with family at a local Chinese restaurant over a scrumptious dinner of all kinds of Chinese favorites. There was Moo Shu Chicken, Mongolian Beef, Egg Rolls, Fried Rice, Chicken Wor Bar, Sweet and Sour Shrimp, and some other dishes. We all ate to our hearts content sharing memories and laughter. It was a good time to just relax and let our hair down. Later, we came back to the house for cake and ice cream. The cake was from Publix and had delicious cream cheese frosting and a luscious center filled with chocolate and strawberries. It more than likely had a couple of thousand calories but we didn't mind! We were celebrating and calories didn't count.

Throughout the day, I'd been emotional. It was hard not to think about all the things I'd been through over the past three years. I couldn't help but remember the surgeries and the pain. There had been many struggles and physical challenges. I'd spent 840 minutes underneath a linear accelerator being radiated. I'd been sick from radiation fatigue and had experienced radiation burns along my right chest and neck. I'd gone through physical therapy, manual lymphatic drainage, and spinal therapy. I'd traveled many miles to countless appointments. I'd spend untold amounts of time on phone calls to doctors. I'd dished out hundreds of thousands of dollars on medical bills, prescriptions, bandages and ointments. I'd had MRI'S, CT SCANS, BONE SCANS, PET SCANS, ULTRASOUNDS, CORE NEEDLE BIOPSIES, XRAYS, MAMMOGRAMS, and more. I'd given pints of blood for testing.  I'd fought with insurance companies over medical equipment. I'd cried more tears than I could ever count in a million years. I'd suffered insomnia, nausea, cording, and Lymphedema. I'd tried three different anti-hormone therapy medications and had horrible side effects from each of them and the list goes on  and on. But, along with all those challenging, heart wrenching, terrible, horrible, awful, very bad things, I'd also experienced many priceless, beautiful, unforgettable moments. And those were the ones I tried to occupy my mind with on Saturday. Those were the ones that mattered the most.

I also thought about the people who'd been there to support me over the past three years. Some family members had been there through thick and thin while others had chosen not to be there at all. I'd made friends and connections with other breast cancer survivors through Facebook and breast cancer websites. I'd had complete strangers offer their love and support. It had been amazing! I have a briefcase full of greeting cards I've received over the past few years. Each and every one speaks volumes to my heart as I read them over and over again.

Never in a million years did I dream I'd still be alive three years after being diagnosed with breast cancer. I still remember the day I heard the words, "YOU HAVE CANCER." I thought surely I'd be dead within the year, but I'm still here! God is so good and I am extremely grateful! It's been a wild, crazy, tumultuous rollercoaster of a ride and even though I'm still on it, I'm thankful the curves, twists, and hairpin turns have drastically slowed down. I keep pushing toward that miraculous 5 year mark my oncologist keeps talking about...the one that's supposed to mark the "approaching safety zone" where the fear of recurrence gets all but obliterated but it seems so far away. No matter how hard I try, I can't help but wonder if I'll ever experience another round of cancer. I surely hope not but if I do, I'll be better prepared the next time around. But I'm really, really hoping there's no next time.

So, happy cancerversary to me! I've made it one more year. For some reason, it feels like cancer was just a tiny blip on the radar and now that tiny blip has disappeared and I'm home free. I guess that's kind of what hope feels like, isn't it? And speaking of hope, if you think about it, I'm already into the first day of my fourth year being "cancer free." (I put those words in quotes because my oncologist won't declare me cancer free although I did goad him into saying I was N.E.D. (no evidence of disease) on my last visit. Isn't that great?! Life is good and I am blessed. What more could a girl ask for? (except maybe a new Porsche and some diamond earrings...)

Sunday, July 2, 2017

The Joy of Being Accepted

Last year, we visited a neighborhood church. We hadn't been in the community long and were hoping to find some godly, like minded people. We prayed and asked God where He'd have us to go. He led us to Unity Baptist Church.

On our first Sunday visiting Unity, we met a lovely couple. There was an immediate bond between Cindy and I. It was too overwhelming to describe and clear evidence that God had ordained the relationship. As we grew to know Cindy and her husband, Dave, we learned they were part of a motorcycle ministry called F.A.I.T.H. Riders. They were kind enough to invite us to participate in some of the events, which we did. We were pleased to be accepted so quickly and to be welcomed into the F.A.I.T.H. Riders community so readily. Our acceptance was unique since neither my husband nor I own a motorcycle and neither of us ride. We knew this had to be part of God's plan. It became more clear as months passed and we watched His plan unfold.

I feel like I need to give you a little history here. I've always had a heart for bikers. Perhaps it's the rebel side of me from my youth or perhaps it's the adventure and freedom biking affords, I'm not sure which, but it really doesn't matter. I've always loved bikes and I've always loved riding. If anyone offered me a ride, I accepted. I've been on the back of Kawasakis, Suzukis, Hondas, and Yamahas. I've been on raggedy dirt bikes and lush comfy Goldwings. It didn't matter what type of bike, I loved them all, but I was never brave enough to learn to ride one on my own.

As I expressed my desire to love and support the F.A.I.T.H. Riders group, I was encouraged to do so but how could I do it? How could a non-biker relate to full time bikers? I prayed and asked God how I could help. He prompted me to offer my administrative skills and my gift of encouragement. I didn't know it at the time, but the Director of the Unity Baptist F.A.I.T.H. Riders had been praying and asking God for help with those very things!

As I talked with the Director and shared my heart, it was as if a landslide of ideas began to pour forth. We collaborated and began to work on finding ways to minister to the bikers in our area. Our efforts started out small but began to blossom and grow. God has used my willingness to be part of the group to not only bless me, but to bless others.

I am so grateful to be a part of the Unity Baptist F.A.I.T.H. Riders. They are a wonderful group of men and women who love the Lord. As I've watched them interact with each other, I've learned a lot. There is a special bond between bikers and a beautiful code of respect their share.

Although I don't know how to drive a motorcycle, I've always loved riding on the back of someone else's bike. There's no greater experience than feeling the wind in your face, the sun on your back, and freedom from worry and care. Those feelings have been magnified for me since having been diagnosed with breast cancer.

Three years ago, I thought my life was over. I was told I had stage 2B Invasive Ductal Carcinoma breast cancer. The cancer had not only invaded my breast, it had traveled to my lymph nodes. At 56, I prepared to die. But God in His magnificent grace, gave me a second chance. Instead of allowing me to go through the trauma of chemotherapy, debilitating illness, and eventually death, He allowed me to live! Now I'm not going to sugar coat the past 3 years and make them seem like they were a piece of cake, because they have been the most difficult years of my life, but I know He had more for me to do and that's why I'm still here. Cancer made me realize how precious each moment can be and that I'd taken a lot in life for granted. That's where F.A.I.T.H. Riders came in...

The F.A.I.T.H. Riders have filled a need in my life. They're not just a passing fancy or a weekend hobby, they've become a vital part of my life's ministry. I find joy being able to pray for the special needs of the members. I look forward to waking up in the morning and writing mini-devotionals for their Facebook page. I am honored to be able to maintain and update their blog. And although I'm not a REAL biker, I've been accepted into their group.

Today, as we went to lunch, I wore my F.A.I.T.H. Riders leather vest with my colors. This was the first time I'd felt I had the right to wear my vest in public. As we entered the restaurant, I was proud to have the F.A.I.T.H. Riders logo emblazoned across my back. I was prepared and ready should anyone have questions about the group or my faith. Of course, Satan did his best to take away my joy. A fellow rider questioned why I was wearing the vest since I'm not a rider. At that very moment, my heart sank and I felt ashamed. I wanted to run out to my car, slip off the vest, and pretend I'd never worn it, but then...I felt God speak to my spirit and affirm that I did indeed have the right to wear the colors. I was a vital part of the ministry even if I didn't ride. He reminded me of all the hours I'd spent praying for each member, all the hours I'd agonized over planning material for the blog or the devotionals, and how He'd been using me to reach out to others. No, I wasn't a rider and I didn't pretend to be, but I did love them and I needed to be part of them.

A couple of months ago, I was on a ride with one of the bikers. Comfortably seated on the back of a Honda Valkyrie, we'd traveled the back roads of South Georgia. We covered 100 miles that day and my heart was full. One thing that touched me as we rode was the biker wave. I'd never paid much attention to it in all my years of riding with others until that day. As we rode, we'd pass other riders. As we approached, each driver stuck out their hand in a low wave. But it was more than a wave. It was a symbol of respect and camaraderie. It was a brotherhood. The riders were complete strangers and yet, they gave honor to the other rider. That spoke volumes to me. Shouldn't all of us be as gracious?

Many people look at bikers with disrespect. They judge them by their appearance. They assume they're roughnecks, foul talkers, and bar hoppers, and while there are some bikers who definitely fall into those categories, I assure you the F.A.I.T.H. Riders do not. These men and women live to a higher standard. Wherever they go, they represent Christ. They are His representatives and they want the world to know it. No, I'm not a biker, but I'm sure proud to be part of a group of riders. Maybe my gifts are small and maybe they go unnoticed, but I'd like to think I'm worthy of receiving the biker wave, at least in my dreams.

Monday, June 26, 2017

Cancer doesn't have to be a family affair

The phone call I never expected to receive came in last week. My youngest daughter was on the line. “Mom, I went to the doctor and she found a lump in my breast.” As she spoke the words, I felt my heart seize in my chest. Every ounce of my being wanted to scream out in agony, “Not my baby girl, cancer…not my baby girl!” Since receiving my breast cancer diagnosis, I’d never given much thought to the possibility that one day a child of mine might contract the disease and yet, three years post diagnosis, and here we were.

I continued to listen as my daughter explained the plan. The primary care physician was sending her to a breast specialist. The specialist would perform a diagnostic mammogram and if she felt it necessary, she’d also perform an ultrasound. That plan sounded all too familiar. I’d already been there and done that. My sweet little girl couldn’t fathom the tsunami of emotions welling up inside me. I didn’t want to frighten her, but I wanted her to know what to expect. Very gently, I explained the process to her. At 29, she shouldn’t be dealing with this right now. Maybe at 35 or 40, as the oncologist suggested for my girls as I completed treatment, but not now! She sounded so worldly and well informed. “Mom,” she said, “I already know. It’s going to be okay.” How could she sound so calm and free of fear? When I’d been told the same thing, I went into major freak out mode. It never occurred to me that she was trying to hold it together for my sake.

A few days later, one of my other daughters and I traveled to the Atlanta area to meet my youngest child for her appointment. Sitting outside the breast specialist’s office, I experienced an overwhelming bout of Deja’ Vu. Instead of seeing my daughter walking into that office, I was the one timidly pressing the elevator button. I was the one passing through the large glass doors. I was the one standing frozen in front of the registration desk. I tried to shake off the feeling and push the memories aside. This was not my experience, this was hers. I watched with careful eyes as my little girl, now grown, walked with confidant steps. She strode quickly as we followed behind. My other daughter, Laura, and I whispered. We hoped Jamie was all right. As we entered the office of the breast specialist, my eyes caught the large BCS logo printed on the wall. Three years ago, I wouldn’t have had any idea what those initials stood for but knew too well now.

After registration, we all sat in chairs along the wall. Thankfully, we were the only women in the office at that time. Laura and I made small talk to help put Jamie at ease. Gradually, the room filled with other women. I scanned the waiting area. Women of all ages were present but the median age seemed to be around 45. Most of the women were waiting for their annual mammograms. I didn’t see a single woman my daughter’s age.

I’d explained the procedure for the mammogram to my daughter earlier the previous week. I didn’t want her going in for the test unprepared. When I had my first mammogram, I was clueless. No one had taken time to give me a heads up and I hadn’t thought to look on the internet for information. I’ll never forget the feeling of complete humiliation as the technician took my breast and placed it on the cold, plastic plate. Feeling my body part being squeezed tightly between two plastic plates had been extremely painful, but even more than that, it was embarrassing. I explained each step of the mammogram in great detail to Jamie. Maybe I gave too much information, but I wanted her to be well informed and prepared.

When they called my daughter’s name, we went back with her. There was no way I was going to let my child go through this alone. We were taken to another waiting area and a volunteer took Jamie back to the dressing room. A few minutes later, she came out in a gown. I could tell, by the look on her face, the reality had just hit her. We sat and waited with the other women. All of them sitting in navy blue robes like perfect little marionettes, waiting for the puppet master to pull their strings and make them perform.

After the mammogram was complete, Jamie joined us in the waiting room once again. She explained the doctor wanted an ultrasound. Hearing those words caused me to tremble. I knew the doctor wouldn’t have ordered an ultrasound if she hadn’t seen something on the mammogram that needed further investigation. I kept my thoughts to myself and listened as my girls talked. Silently, I prayed. I asked God to please protect my daughter. I didn’t know how I’d have the strength to handle it if she received a cancer diagnosis. I begged Him to let her be okay.

The ultrasound was fairly quick and within fifteen minutes, Jamie was coming out of the back office dressed and ready to go. Laura and I looked quizzically at her waiting for an explanation, but none came. When I asked point blank, Jamie said, “Mom, I’ll tell you outside. Let’s wait until we get to the car.” Oh, my! Surely this couldn’t be good, I thought to myself.

Outside the breast specialist’s office, I waited for the results of the test. I was overjoyed when my daughter said, “They couldn’t find anything but I have to go back in three months.” I wanted to jump up and down. I wanted to do cartwheels across the parking lot. To say I was overjoyed was an understatement! Although she didn’t say it, I could tell a huge peace was washing over Jamie. I saw her shoulders relax and the tension leave her face as we went to our cars. Hugging her tightly, I began to cry. All of the pent up emotions I’d kept inside for the last couple of hours spilled out. Jamie looked me in the eyes and said, “Mom, I told you everything was going to be okay. That’s one reason I didn’t want to tell you I was going to have to need this test. I knew it would upset you. I knew it would bring back too many memories.” And she was right. Being here had certainly dredged up painful memories from the beginning of my cancer journey.

We celebrated the good news over a leisurely lunch and followed that with a trip to the ice cream shop. I watched as Jamie licked her ice cream cone. This 29 year old woman was still my baby girl and always would be. As she nibbled at her cone, I got a glimpse into the past of Jamie when she was a little girl doing the exact same thing. Her mannerisms hadn’t changed much over the years, although her stature certainly had. I was proud of how she’d grown. I was awed by her strength and marveled at her bravery. I wondered where she obtained those characteristics, certainly not from me.

I was thankful her tests were over. In three months, we’ll go through the tests with her again and we’ll pray for the same results. We thought we’d gotten rid of the fear of cancer with my experience and surgery but apparently not. It seems cancer longs to be a permanent part of our family but that’s not going to happen, at least not on my watch. Cancer doesn’t have to be a family affair and we’re going to do our best to keep it that way. 

Friday, June 16, 2017

A little creativity goes a long way

Last year, I wrote a couple of articles outlining some challenges I’d faced dealing with summertime temperatures and my prostheses. I wanted to give a clear perspective on the difficulties of surviving breast cancer surgery especially as those challenges related to mastectomies. This year, I find myself taking a more humorous glance into the same world and I hope what I share will make you laugh just a little.

Silicone prostheses are wonderful! They come in all shapes, sizes, and colors. These breast forms range in price but can be quite expensive. The designers do their best to make the forms look as life like as possible. Some forms have nipples and some do not, but there are drawbacks to the realism these facsimiles provide. Silicone breaks down over time requiring replacement annually. If punctured, the breast form will leak. And while these forms feel very similar to real breasts, they are not. If you squeeze them too hard, they will burst. Silicone prostheses must be held in place against the chest wall by either a self-adhesive pad or a mastectomy bra. Silicone is not lightweight and the larger the cup size, the more heft to the prosthetic.

About ten years ago, I had my first experience with a prosthetic. We were cleaning out my mother in law’s house after she’d passed away and there in her dresser, inside a little round box, lay her flesh colored breast form. I’d never seen one before and was curious. I wanted to touch it and feel it. As I held it in my hands, I couldn’t help but think about my mother in law and her bout with breast cancer. She was very private about her situation never talking openly about her cancer. She’d had to have one of her breasts removed but didn’t shared her challenges with family.

Three years ago, I was diagnosed with breast cancer. After having both breasts removed, I was given a prescription for prostheses. Who ever dreamed you’d need a prescription for boobs? It was quite an experience standing in the little boutique amid boxes and boxes of silicone breasts. I was overwhelmed having to choose new breasts. I had to decide what size I wanted to be and what type prostheses I wanted. There were so many choices and I was unable to think clearly so I relied heavily on the advice of the fitter. I went home with two boxes. Inside each box was a silicone breast form. I’d chosen a C cup, after all, I’d been a barely B for most of my life. Didn’t I deserve to enhance my figure a little?

After wearing the new breast forms for a while, I realized I’d made a mistake. The C cups were extremely heavy and uncomfortable against my fresh mastectomy scars. I returned to the boutique and asked for a breast reduction…well, not really. I asked for a reduction in cup size explaining my challenge in wearing the heavy C cup forms. I opted to downgrade to an A cup. A new model was available with a cooling gel backing. The fitter explained it would be more comfortable during the warm summer months and she was right. I found the smaller cup worked much better and the cooling gel helped a lot. Still, the weight of the silicone was too much. Every time I went to the doctor’s office to be weighed, I had to explain that extra 5 pounds I’d gained. They always got aggravated when I asked them to deduct the weight of my prostheses but I was diligent and they finally relented.

Last summer was unbearably hot. I dreaded going out in public and having to wear the heavy, sweaty, hot prostheses so most of the time I didn’t wear them. While not wearing the prostheses solved the problem of dealing with trauma to my scars, I felt embarrassed to be out in public without my breasts. I needed to come up with a solution.

I thought long and hard about ways to solve my problem. The first idea I had was to make my own breast forms from a material other than silicone. As I began to think, there were two options. The first was to use a tiny, lightweight product called microbeads. These beads are found in many children’s stuffed toys and are used to make comfortable travel neck pillows. I had one of those neck pillows on hand so I decided to cut it open and use the beads from it to make my first set of lightweight forms. Big mistake! When I cut into the travel pillow, tiny Styrofoam beads went flying everywhere. They stuck to the walls, carpet, and me. I did my best to scrape them up and put them into another container. After a lot of work, I finally managed to get them wrangled. Taking some soft jersey knit fabric, I fashioned two breast form patterns by drawing around my silicone prostheses. I seamed up the new forms and left a small opening for the microbeads. When I tried to get the beads into the forms, like little magnets, they adhered to everything. I had to figure out a way to get them into the forms efficiently. After a lot of thought, I had an AHA moment – the turkey baster! I suctioned up the microscopic white beads and forced them through the opening in the homemade breast forms. After I filled each one, I seamed up the hole and VOILA! My new breast forms were done. I placed them in my mastectomy bra and tried them out. They were extremely lightweight and felt wonderful. But in a few minutes, I felt them rising. Since there was nothing to weigh them down and keep them in place, every time I moved, my bra moved with me and the forms rose higher and higher. Soon, they were just under my chin! This would not do. I tried to think of a way to weight them down inside my bra but couldn’t come up with a solution so I scrapped that idea.

Next, I decided to try polyester fiberfill. This product would also make a nice homemade prosthesis. Once again, I chose a soft jersey knit fabric. I traced gently around the silicone form with a marker to get a perfect pattern and cut out the fabric. After sewing the pieces together, I stuffed the fiberfill into the new breast form. These forms, too, were lightweight and fluffy. They fit well into my bra but as I tried wearing them, they too rose out of the normal breast position on my chest. An abnormal placement of breasts would be very noticeable in public situations, I just knew it.

Frustration drove me to the internet. I researched many companies that manufactured breast forms. There had to be something out there that would work for me. Finally, I came across a viable option. I found two organizations offering free knit or crocheted breast forms to women who’d faced breast cancer. The first was called Knitted Knockers and the second was called Awesome Breastforms. Their teams of volunteers made knitted or crocheted breast forms as an act of love. Knitted Knockers asked for a $10 donation to offset the cost of materials and shipping. Awesome Breastforms did not accept monetary donations but did have an Amazon wish list for those who wanted to help out. I was impressed with both companies. Knitted Knockers even offered free downloadable patterns and video tutorials for those wanting to make their own knockers. Since I didn’t know how to knit using three needles, I chose to let them make the knockers for me. 


I had several choices to make before ordering my knockers. First, the color. Did I want neutral, pastel, bright color, or multicolored yarn? Next, I had to decide whether I wanted my new forms to have nipples or not. I was unsure. Then, I had to choose the cup size. I had no idea what to do so I chose the “let us choose for you” option. A few weeks later, I received my knitted knockers. When I took them out of the package, I was amazed. They were so soft and pliable. The handiwork was exquisite and I could tell someone had made this gift of service their fulltime ministry. Yet again, I took the forms and slipped them into my bra. They were comfortable and light but they didn’t want to stay put. I found them crawling up under my chin. Oh no, not again!

I tried to come up with a way to keep the knockers in place. An instruction sheet included with the knitted knockers suggested placing small, flat garden marbles inside the breast form to help weight it. I tried that and it didn’t work. Maybe I didn’t use enough marbles! I was more than upset! I took the knockers and sat them aside. I couldn’t deal with it any longer that day.

I’d always heard it said that “necessity is the mother of invention.” I needed to figure out a way to keep my forms in place, at the normal, natural location where my real breasts used to reside.  Marble garden weights didn’t work. I liked the lightweight forms but didn’t want them under my chin. The more and more I thought, the more creative I became. Finally I had an idea. I needed to find a way to anchor my bra in place, thus keeping my breasts where they needed to be.

Walking through our neighborhood Goodwill, I found a suspender type strap. It had a clip on both ends. Now we were getting somewhere! I purchased the suspender strap, which was really designed to cinch in loose waisted jeans, and took it home. After unpackaging the strap, I lifted my shirt and hooked the top clasp to my bra and the second clasp to the top of my pants. I cinched it tight until my breast forms moved into the proper position, lowered my shirt and looked in the mirror. At last! My boobs were where they were supposed to be. They felt lightweight and comfortable. No more heavy silicone forms weighing me down, making me hot, or causing me pain. I felt good knowing I’d found a solution to my problem and no one would know my secret unless I raised my blouse. That evening, I showed my husband my ingenious invention. Through hysterical laughter, he warned me to be careful. With a puzzled look on my face, I looked quizzically in his direction as he exclaimed, “You know if that strap ever comes loose, you’re going to get slapped hard in the face.” He was right. There was a good bit of tension on the strap. I’d adjusted it so it was tight enough to pull the bra into the proper position. After all the hard work and drama, I wondered if it was worth the effort. I could just wear the heavy silicone forms and suffer through the summer in silence or I could go without breast forms and be embarrassingly flat. But, I wanted the best of both worlds! That’s why I worked so hard to find a way to make it work. Now I’m not saying my solution is the perfect one, I’m sure it’s not, but it will have to do for now…until I can come up with another idea. And if you have one, I’m open to suggestions! You know what they say, “Where there’s a will, there’s a way.”

  




Thursday, June 15, 2017

What a difference a day makes!

Have you ever had a day where you just felt really, really ill...I mean to the point it felt like a big cosmic vacuum cleaner had hovered overhead and sucked out every ounce of your energy? Well, yesterday, that's the way I felt. On top of the lack of energy, I had picked up some kind of germ while out shopping the day before with my daughter. My throat was raw, my muscles ached, and fever wracked my body. It was not a good day. I didn't do anything other than sit in my recliner. It was 90 degrees outside but I was freezing one minute and burning up the next. I wanted to have a pity party but I was too tired. I did all the things I knew to do - I drank lots of fluid, took Tylenol every 4 hours, slathered my neck with OnGuard essential oil, gargled with warm salt water, and prayed.

My sweet hubby texted from work and asked how I was feeling. When I shared the news, he asked if I wanted him to stop and pick up dinner. At first, I said no. I was going to try to make dinner but as the day wore on, I recanted and asked him to pick up Chick Fil A. He said he would.

When he walked through the door, my sweet mate could tell I was struggling. He took one look at me and started to cry. I was surprised by that reaction and croaked out, "Why are you crying?" He explained he was scared. He said he didn't want to lose me. I told him it was just a bug and not to worry. He was okay after that but I realized, as did he, we'd both been traumatized by the cancer and we'd both been on constant alert in case it ever reared its ugly head again.

We ate our dinner in the dimly lit living room as we watched a program we'd recorded from cable. He was exhausted from working in a hot warehouse all day and I was wiped out from the internal battle my white blood cells were raging against some interloper. What a pair we were!

By the time 8:30 p.m. came around, we were both ready for bed, but we stayed up a little longer so we wouldn't wake at the crack of dawn. At 9:30 p.m. sweet hubby went to get the bed ready and crawled in exhausted. I waited about thirty more minutes to give him time to unwind and fall asleep.
By the time I entered our bedroom, he was snoring loudly. I was so thankful to be able to call it a day. By the time my head hit the pillow, I could barely keep my eyes open but, as I usually do, I made myself read a few chapters in a good book. It always helps me relax and pretty soon, I felt my eyes getting heavy. I could no longer focus on the words, so I let the book fall to the floor and I clicked off my flashlight.

This morning, as sunlight slid across our room, I began to stir. Another new day. I wondered if I'd still feel crummy. I hoped not. I got out of bed and flicked on the light. Looking at the clock, I saw it was just 6:00 a.m. "What am I doing up this early," I thought to myself. Oh well, when I'm awake, I'm awake so I might as well make the best of it. I made my bed and got dressed. So far so good! I did a little voice check to see how my throat was feeling. Asking myself how I was feeling out loud seemed silly but how was I going to know unless I said something? My voice didn't sound as scratchy as yesterday but my throat hurt. I grabbed my flashlight and took a peek inside my throat. It was raw and red. I didn't see any white spots so apparently no strep. It was probably just a good case of pharyngitis. I made a note to have some warm tea with honey and lemon.

After breakfast, I got busy about my day. I noticed I wasn't as tired as I'd been yesterday. I could tell I wasn't quite myself yet, but I was getting there and that made me happy!

It's amazing how much difference a day makes. God has made our bodies to be amazingly creative at healing. I could imagine tiny white blood cell warriors, swords raised, charging into battle against the nasty germ that had tried to take up residence in my body. Yesterday, while I was feeling so rotten, the war must have been intense. Today, as I began to feel much better, I could imagine them about to raise their little banner of victory.

When you've been the victim of cancer, every illness is cause for concern. I'm thankful this one has come and gone, but it was tough while it lasted. I continue to equip my body to do what it can to fight by taking natural supplements every day. Some days, I want to give up, but I know it's the best way I can fight cancer naturally and stay healthy. If you saw the number of vitamins and supplements I take each day, you'd probably stand with your mouth gaping open. I won't give you the exact number, but I will tell you it's quite a lot and sometimes, I feel like I'm eating more pills than I am real food. But, ya gotta do what ya gotta do, right? Whatever it takes to continue giving myself a fighting chance, that's what I'm going to do. And my little white blood cells are always at the ready.


Saturday, May 27, 2017

I know the plans I have for you

There's a verse in Jeremiah 29:11 of the Bible that gives me great comfort. It says, " For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." I was thinking a lot about this verse today, in fact, when I woke up this morning, I was thinking about it. I'm a planner and I find security in knowing the plan. It's so much easier when there is a plan and I know exactly what's about to happen. Since I was diagnosed with breast cancer, all my plans have gone out the window. I've had to learn to be flexible. Instead of having a solid plan A, I've had to learn to be willing to move from plan A to plan B or even plan C, D, or E. It hasn't been easy, especially since I'm a type A personality. I like to be in control of things. I need to understand the plan.

I've never liked change. I like things to remain the same unless I get the urge to change them. Little changes don't bother me too much but big changes do. And it seems God has some big changes in store for us in the near future. 

My husband and I have been feeling a stirring in our hearts. It seems God is getting ready to move us. We don't know exactly when or exactly where but we know it's coming. Even if we don't know the details, we know God does. He knows the plan. We've been doing a lot of praying lately and asking God to give us the details, but He hasn't yet. This has been difficult. I like knowing the plan! I don't like waiting and I don't like wondering. My husband is more patient than I am. He doesn't mind waiting. I admire that quality in him but sometimes I wonder how he can be so calm and collected when we have no idea what the future holds. 

I guess God's continuing to teach me to trust Him completely. That's one area He's been working on in my life for some time now. I hate to admit it, but it's easier for me to trust when I know the plan! Maybe that's why He hasn't revealed it to me yet. He wants me to learn patience. 

So....as we wait, I'm trying my best to be patient. I'm trying to trust completely. I feel like a child sitting in the backseat of the car while my parents get ready to pull out of the driveway. I keep asking a zillion times where we're going and all they'll tell me is, "It's a surprise!" I feel eager and excited but also frustrated and confused. I sit in the middle of the back seat fidgeting. I want so badly to know where we're headed but all I can do is look out the window, watch, and wait. 

The destination looms far ahead of me. I can't see it. I am so curious it makes me crazy but I have to wait. I know God's timing is always perfect. I know the plans He has for me are good plans, plans that will be beneficial for my future. I know God loves me and wants the best for me. Knowing all these things help me stay put...but it's really, really hard. 

I can't wait to see what God does in the days ahead. I'm going to be watching and waiting for His revelation to come. Until then, I'm going to try super hard not to bite my fingernails down to the quick...I know the wait will be worth it. So, I wait.

Saturday, May 20, 2017

Life Is Good!

It's a beautiful Saturday morning and I was up before the crack of dawn. 6:00 a.m. doesn't seem an appropriate time for waking when one is retired and has absolutely no obligations whatsoever, but 6:00 a.m. is perfect for me. For the past couple of weeks, I've been able to sleep like a normal person. This has been a major accomplishment! For the past two and a half years, I've suffered insomnia and haven't been able to sleep without some form of medication so it's wonderful to wake at 6:00 a.m. feeling rested and ready to meet the day.

My postings have been slack, I'll admit, but that's a good thing. It means life is good and I've been busy. It feels great to return to normal instead of living under the shadow of what if. Daily routine feels wonderful. Even doing a load of laundry feels amazing.

It's hard to believe we're already nearing the end of May. Time flies by so fast! In July, I'll be celebrating my third cancerversary. And while my oncologist won't say I'm cancer free, I feel cancer free! I'm so happy to finally be free of having to live my life as a victim. I am a victor! Maybe you're thinking I'm always positive about things and that's not necessarily true. I have my good and bad days but, I try to focus on the good days and let the bad days slip away unnoticed. I don't have energy to waste on negativity.

So today, I'm celebrating the goodness of life. I am blessed beyond measure. I'm feeling physically well and I'm claiming I'm cancer free. Those are good things to celebrate, don't you think? I sure do!

Wednesday, May 17, 2017

Another Cancer Scare

The call from the Gastroenterologist came in today. I had almost forgotten we were expecting to hear news about my husband's recent colonoscopy. We'd had a good feeling about it. It was just a routine test. Although he's had polyps in the past, we weren't concerned about this tiny one they'd found on this test.

For the past few months, my husband's had a nagging feeling. He knew he needed to get another colonoscopy. Since his mother and father both had a history of cancer, he wanted to stay on top of things. I was surprised by his insistence on getting the test scheduled. No one likes to have a colonoscopy, especially when you have to do all the nasty pretest prep, but he was diligent.

When the call came in, he was at work. The tone of the nurses's voice wasn't concerning as she gave me the results of his biopsy. Since I was expecting nothing but good news, I was a bit surprised when she said the polyp was precancerous. It had been so tiny on the photos the doctor had shown me. I wasn't prepared for the overwhelming emotions that came after I hung up with the nurse. While I was thankful, I was also fearful. My husband has always been my rock. He's the calm one. He keeps me grounded when things are out of control. As I began to go down the road of "what ifs" I got very emotional. God knew we weren't prepared for another dance with cancer.

After notifying my husband of the report, I encouraged him to think positively. We had gotten a good report. There wasn't any active cancer. The tiny polyp was only precancerous, meaning the cells, if left untreated, could turn into cancer at some point. The doctor's office assured me they'd recheck him in another three years and for that I'm grateful. We'll definitely stay on top of his colon health.

Isn't it funny how we take good health for granted? When anything threatens our health, we immediately become fearful and that's probably a natural fleshly response but Phil and I have chosen to put our faith in God. We're going to trust that He has only good in store for us and for our future. And even if we have to face another round of cancer one day, we know God is faithful. He's going to be right there beside us walking us through every single step of the journey just like He did with me. Knowing that brings us great comfort. So today, we celebrate good news! Even if it didn't come quite the way we expected, it's good news. No cancer! Thank you, Lord!

Wednesday, May 3, 2017

Writing a book is difficult!

I haven't written on my blog in some time now. I have a good reason, I've been working on my book. Writing about my cancer journey in a book format is challenging. I've never written a book before. People tell me it will be a piece of cake. Each year, at the end of the year, I've had my blogs printed into a book format to save for posterity's sake. Friends tell me I should be able to just cut and paste from my blogs and the book will just fall into place, but not so! Writing and re-writing dredge up memories that cause emotions to kick into overdrive. I've been working on this book for a couple of months now and I'm only up to chapter four because of having to process old memories once again. I don't like reliving my cancer journey. It wasn't easy the first time around and it's certainly not easy this time around either. But I'll do it because I'm hoping my story might inspire or help someone else who's going through breast cancer. I want my cancer to count for something positive.

Writing is challenging also because of the long hours of typing. Lymphedema makes it difficult to say the least. I try to write early in the day when the swelling hasn't flared up yet but by mid morning, my arms are so swollen, I have to stop.

It may take a year or more to get this project done. There's no time limit. I don't have publishers beating down my door to get hold of the manuscript. In fact, I'll probably end up self publishing because if you're a little peon like me, publishers aren't interested. They prefer to go after well known authors or celebrities. I'm not expecting to get paid for my work, although it would be quite nice to receive a little money on the side. I certainly wouldn't turn it down if an offer came my way...

So, that's what I'm up to...just writing. Life is good and fairly normal. I'm so thankful to say it's normal for a change. For the past couple of years it hasn't been even close to being normal.

On July 9th, I'll celebrate my third cancerversary. I'm looking forward to that. I'll have to plan some sort of celebration. It's hard to believe it's been almost 3 years since I was diagnosed. God is good!

Tuesday, April 18, 2017

My body my choice

Yesterday I was given the opportunity to review a booklet from my breast surgeon on D.I.E.P. flap reconstruction. I wasn't sure how I felt about the procedure but wanted to do some research before making my decision about reconstructive surgery. This was not a decision I could make lightly and there were many things to consider.

When I got home, I read the booklet. I got online and researched surgical videos, internet medical resources and talked to three breast cancer survivors who'd already been through this surgery. All of the information I found was overwhelming and I went to bed feeling bogged down. As I crawled into bed, I lay there and prayed asking God for His wisdom and direction.

This morning, my husband and I discussed the surgery. I shared information with him on what I'd found regarding the surgery and recovery period, complications, etc. After listening carefully to all I shared, he said he would stand behind me in whatever decision I made. So today, I've been doing a lot of thinking and even more praying. As I've processed it all, I've made my decision.

I've decided not to have the surgery and I have several reasons to support my decision.
  1. The D.I.E.P flap surgery is major surgery. It doesn't only involve one surgery but two. The doctor said the surgery would be about 10 hours long. Anytime you're put under anesthesia for any length of time it's dangerous. The doctor said I would be in intensive care for 2-3 days after surgery and have about a month of recovery at home. A recovery period of that length doesn't seem doable. I would need in home care and there's no way my husband could take off work that long. 
  2. Expensive - although the majority of the surgery would be covered by my medical insurance, we'd still have to meet deductibles, and pay our portion of the surgical and hospital bills not to mention labs and other expenses. 
  3. Pain: I'm not really keen on going through a lot of pain again. It has taken almost 3 years for me to get over the last two surgeries. I don't know if my body could handle that much trauma again. I'd be cut horizontally from hip to hip and then have several incisions at each breast site. With all of my other surgeries, if I had these too, I'd look like I'd been mauled by a serial killer.
  4. Why: Why would I want to do this anyway? Would having fake boobs give me more self esteem? I don't think so. Cancer has taken away my breasts, the ones God gave me, so why should I try to rebuild what He allowed cancer to take away? 
  5. Would this change anything about my marriage? Not really. The only thing it would change is to cause us more stress and pain. 
  6. The real reason for surgery? Would I be doing it to benefit my health (as the doctor suggested - I posted about this in yesterday's blog post) or would I be doing it out of vanity? Yes maybe having the weight of breasts replaced would help my spine, but is it really necessary? Couldn't I just continue to do stretching exercises I was taught in physical therapy sessions to help my back? Most of my back problems are from bulging or herniated discs and degenerative disc disease so I don't think the missing breasts are the main culprit of my pain. 
  7. Complications: There's no guarantee I'd survive the surgery without complications? I was reading and studying about that surgery and many times tissue removed from the belly to make the new breasts will die. When that happens, doctors must remove the dead tissue and start over. This dead tissue is called fat necrosis or tissue necrosis. Since I've already had one episode of tissue necrosis after my initial surgery, I think my chances of developing necrosis again are probably very great. 
  8. I'm getting old! At this time in my life I don't feel like I need to go through any more major surgery. I've already had so many. I'll be 60 in December and I want to maintain my quality of life. I'm enjoying going and doing exactly what I want to do when I want to do it. If I have surgery again, I'll have many physical limitations that would prohibit my current plans. 
  9. It's my body! Just because the doctor suggested it and highly recommended it, doesn't mean I have to do it. It's my body and is ultimately my choice. Why do something I don't really and truly want to do?
  10. Boobs: When I want to have them, I can. I have silicone prostheses and when I slip them into the mastectomy bra, you'd never know they weren't real. I'm the only one who knows the difference. When I get tired of the weight of the prostheses and want to take them off, I do! Flinging my boobs across the room has become very freeing and usually brings laughter to family members who are here when I do it. The boobs always wind up in random places like the back seat of my husband's car or on the kitchen counter. How many women can just take off their boobs whenever they want to? Not many! 
So I've made my decision and I'm sticking to it. I'm not going to cave to the pressure of my doctor. I hope she'll be respectful of my decision but even if she isn't, I feel good about it.