Every little things gonna be alright

It's been a little while since I've written, so I felt like today was a good day to catch up. You've heard that old adage - no news is good news? Well, it's true! I am happy to report that absolutely nothing eventful has taken place in my life for some time now and it feels absolutely amazing. Of course I still deal with the daily after effects of breast cancer -  low self esteem, fatigue, and lymphedema, but those little creeps are going to be with me for the rest of my life, I guess, so I'd better get used to them and move on.

Fall is coming and I'm thankful! That means cooler weather and long sleeve blouses. Sweaters and layering are my best camouflaging tools. I'm still embarrassed by the girth of my upper arms (thanks, lymphedema) and finding tops that fit is a constant challenge. If I buy clothing a few sizes larger, the arms fit loosely and comfortably but makes me look like I've got room for a crowd elsewhere. So what's a girl to do? I guess buy a pattern, modify it, and get busy sewing...

Speaking of sewing, I made a new tablecloth for my formal dining room table yesterday. I have a large oval cherry table and it seems manufacturer's don't seem to think anyone has oval shaped tables any longer. I can find pre-made tablecloths in rectangular, square, and round shapes but not oval. It's frustrating but I'm thankful I know how to sew.

My energy level seems pretty consistent these days. I usually go strong from 7:00 a.m. until 3:00 p.m. and then my get up and go departs. I've learned to plan accordingly and when I have a big project, I get started on it early. I work hard until mid afternoon and then, when I feel the fatigue setting in, I stop. It's been hard to get used to but as I've set these healthy boundaries for myself, I'm able to feel better.

I've been working on my book for several months now. I never thought it would be so hard to process my thoughts and put them down in a cohesive order, but it has. I find I don't make time during the day to write much for myself. I'm always working on articles for the breast cancer magazine or working on book reviews for Christian companies. While I enjoy doing those things, I really need to focus on my own project now. I'd hoped to complete my book by December but now it looks like I'll be pushing into next year.

We've got several trips planned before the end of the year and I'm looking forward to those little getaways. It's amazing how rejuvenated I feel after returning from a small trip. Just being able to step out of my familiar surroundings into a different environment is very therapeutic.

It's strange not seeing a doctor every other month now. I'm finally on the six month regimen with my oncologist. While it's scary not having that constant safety net of periodic checkups, I'm enjoying feeling more normal. Hospitals, medical offices, and labs have been my world for the past three years. I feel like I've broken free from my ragged rope tether and I'm running freely through the world of good health...AND IT FEELS SO GOOD!

So, that's all that's happening in my world right now. What's happening in yours?

Affordable Testing For Cancer Genes Is a Gift

As I was watching Good Morning America, one story caught my attention. Dr. Jennifer Ashton, a medical consultant for the TV show, shared information about the recent development of an affordable and accessible genetic testing program developed by the health service, Color. The test allows patients to perform a simple at home saliva collection and submit the sample for testing. The company claims, on their website, their goal is to “expand physician-supported access to genetic testing to help every person, everywhere understand their risk for hereditary disorders.”

Recently, when my youngest daughter needed a mammogram to check a suspicious area in her breast, I became concerned. Her doctor asked about our family medical history. She wanted to know if anyone in the family had ever been diagnosed with breast cancer and, if so, if they’d had the BRCA test performed. My daughter explained there was indeed a history of breast cancer. When her doctor asked which family members were affected, she explained only her mother had received a breast cancer diagnosis.

After my daughter’s appointment, she shared about the doctor’s request for information on genetic testing. I’d never been tested for the BRCA genetic mutation and wondered if this was a test I should have performed.

I contacted my oncologist immediately and asked her advice explaining concerns for my daughter. She assured me the test was unnecessary considering my age and the fact that there was no previous history of breast cancer in my family. I felt compelled to push further and asked if it would be possible for me to have the test anyway. I wanted to make sure my three daughters had as much information as possible for future reference especially with my own history of breast cancer.

The oncologist explained the testing was extremely expensive and, although I had good health insurance, she didn’t feel the test was necessary. I accepted her explanation and left it at that. But there was a little nagging voice inside my head telling me it would be a good thing to know whether I carried the BRCA mutation.

Saliva collection container

According to the National Cancer Institute, “BRCA1 and BRCA2 are human genes that produce tumor suppressor proteins. These proteins help repair damaged DNA and, therefore, play a role in ensuring the stability of the cell’s genetic material. When either of these genes is mutated, or altered, such that its protein product either is not made or does not function correctly, DNA damage may not be repaired properly. As a result, cells are more likely to develop additional genetic alterations that can lead to cancer.”

“A harmful BRCA1 or BRCA2 mutation can be inherited from a person’s mother or father. Each child of a parent who carries a mutation in one of these genes has a 50 percent chance (or 1 chance in 2) of inheriting the mutation. The effects of mutations in BRCA1 and BRCA2 are seen even when a person’s second copy of the gene is normal.”

Without my oncologist ordering the BRCA test, it would be impossible to have it completed. Insurance wouldn’t pay for any unnecessary medical procedures and I surely didn’t have thousands of dollars to shell out for genetic testing. I gave up hope of having the test completed and told my daughter we’d just have to hope I wasn’t a carrier of the gene.

As Dr. Ashton went over the collection procedure and the simplicity of submitting the saliva for testing, I knew this was an answer to my dilemma. According to the website, the analysis of the salvia sample could be performed and results mailed back to the client within three to four weeks. It would be possible for me to have results in time for my daughter’s follow-up mammogram.

But I can’t just order the test on my own. The website does explain “All Color Tests are ordered by a physician — either your own or an independent physician who will review your information and can order testing on your behalf. If any questions arise, the physician will contact you. Your physician will receive a copy of your results if they have ordered testing for you, or we can send them a copy per your request.”

And that makes sense. It wouldn’t be wise for someone to order the test and receive results without a physician’s involvement.

I’m curious what my test results will reveal. I’m hoping they don’t say I’m a carrier of the genetic mutation for BRCA1 or BRCA2. I would feel so much better knowing the chances of my daughters developing breast cancer are lowered because I don’t carry either of these breast cancer genes.

The website does state if there’s a family history of breast cancer, it might be wise to choose the more extensive hereditary genetic testing. The broader test costs $249 and analyzes many other gene mutations. Even though this test is a little more expensive, it’s still much more affordable than the cost of other genomic tests.

Bringing affordability to genetic testing is a wonderful gift for those who have been or who may be affected by breast cancer in the future. By simply submitting a sample of saliva and mailing it in, a client can receive information quickly. This will allow more people a chance for early detection and hopefully equip doctors with the tools necessary for assessing cases and starting treatment in the beginning stages of cancer.

Advancements being made in the field of genetic testing are mind blowing. Daily, scientists and medical professionals work diligently to provide the best information possible to the public. Their scientific discoveries are helping to empower people to take better control of their health care. Perhaps one day soon we’ll celebrate the victory of the complete eradication of breast cancer.

Storms on the horizon

Hurricane Harvey and Hurricane Irma have caused a lot of destruction to the United States and surrounding areas. Many people have lost their homes and all they owned. It's horrible to watch the news and see the devastation.

In between the hurricanes, Mexico experienced an 8.1 earthquake. These are troubled times for many.

In Georgia, we felt no effects from Harvey but my daughter and her family did. They live in Texas. It was ugly. Irma was another story. We experienced high winds, heavy rain, and power outages. It wasn't nearly as horrific as Harvey. We are blessed.

As I write this post,  Hurricane Jose is brewing in the Atlantic but it's not projected to hit the U.S. and I'm grateful. We don't need another tragic event so soon after the last two. Hopefully Jose will blow far away from the states and dissipate before causing damage.

When hurricanes form, we have no idea where they're going until days into the forecast. Meteorologists work hard to give us the most updated information as quickly as they can but sometimes, it isn't fast enough.  All we can do is prepare for the worst and hope for the best...and that's exactly what it feels like to have cancer.

When I was diagnosed, I felt the strong winds of a mighty storm begin to blow. They were sultry and gentle at first but grew in intensity as the days went by. Although I couldn't see the storm, I knew it was there. I felt its presence. I knew it was coming. 

I did all I could to prepare but instead of gathering water and other necessary survival items, I began with mental preparations. I started to have conversations with myself about what the future might hold. I role played different scenarios and tried to determine how I would react to each. I felt more secure knowing I had a readiness plan in place. 

When my health storm intensified, I battened down the hatches and did whatever necessary to insure my survival. It was a challenging time. Some days were more difficult than others, but I was determined to ride it out. I wanted to live. 

I watched as the storm whipped and swirled around me. Powerless to control its affects on me, I found myself often huddled in a corner tears streaming down my face. The tears did nothing to comfort me although they did provide an emotional release. 

The storm lasted for 3 years. The intensity has ebbed and waned. As I listen to the news about Hurricane Irma, I'm reminded how I felt in the center of my own personal hurricane, cancer. The center of the storm is fairly calm. My calm came from my relationship with Christ. When the winds strengthened and the rains came, I held fast to the rock that never changes. 

The outer bands of the storm still sweep past me now and then, and often, when I least expect them. These bands contain emotional storms that build slowly and then explode with unbridled fury.

As my cancer hurricane has dissipated over the past year, I find myself doing fairly well in a continual state of recovery. I learning how to move forward and live a life full of rewarding opportunities. Some days are more challenging than others, but I keep plugging along. I find it helps to tell myself it's going to be okay and that I'm doing well.

Positive self talk is a wonderful self preservation technique and I'm finding as I practice it, I'm believing exactly what I'm telling myself. I'm surviving and not only that, I'm thriving! The storm is over and life goes on. And now I feel the winds of changing a blowin'. I wonder what God has in store for me. We'll have to wait and see.

   

Hurricane Harvey How We Hate Thee

Hurricane Harvey made landfall near Corpus Christi, Texas last Friday evening as a Category 4 storm. As the powerful winds swirled across Texas, massive amounts of rain and devastation have occurred. During the storm, however, hospitals have still managed to take care of their patients and one of the major hospitals, M. D. Anderson, in Houston, has done an astounding job.

About two and a half years ago, I was able to personally visit M. D. Anderson. I was on my way to Texas to spend a week with my oldest daughter. On the way there, my son in law and I stopped to spend some time with a friend. She was dying of cancer. This young mother of four knew there was nothing more to be done for her. She spent her remaining days in a pristine hospital room surrounded by those who loved her and the hospital staff treated her with utmost respect.

That visit was difficult for me. I had also been diagnosed with breast cancer and though I was not stage 4, as my friend was at the time, having the reality of her cancer slap me hard across the face wasn't something I'll ever forget.

From the moment I stepped into her room, I felt death all around her. Her body, wracked with pain, lay underneath a mountain of blankets. She was extremely cold although the room was very comfortable. IV tubes hung from her bruised and battered arms. Her face, swollen a deep jaundiced yellow, looked subhuman. Tiny slits in her face were eyes that chose to remain closed. We stood in silence staring down at her as tears welled in our eyes. There was nothing we could do, nothing we could say. Our presence spoke our love and she felt it. After a few minutes, she managed to open her eyes. We spoke softly telling her we loved her and we wanted to come to see her. She thanked us and closed her eyes again. The heaviness eternity surrounded us.

We didn't stay long that day. There were other family members there to pay their last respects and we didn't want to infringe on their time with her. On our way out of the hospital, we didn't speak a word to each other. I think we were both in shock. As we pulled out of the parking lot, I glanced back at the hospital. It was a huge facility and on every floor there were hundreds of patients in various stages of cancer treatment. It broke my heart.

It's hard to believe that was almost 2 1/2 years ago. Today, while on Facebook, I was once again reminded of M. D. Anderson in Houston. An article, written by the family member of a patient, spoke volumes to me and reminded me, that even in the midst of a horrendous storm, hospital personnel manage to keep the proper perspective. They do their jobs. They go above and beyond the call of duty because their commitment to their patients is paramount. Here's what he wrote:

"MD Anderson needs to be praised. They have had what they call the Ride-Out team here since Friday; this means no one goes in or out. Imagine being stuck at work for five days straight. And, imagine finding out you are on this team at the end of your third twelve hour shift. It is not optional; it is understood. These people are saints: the doctors, nurses, nursing assistants, dietitians, pharmacists, supportive care team, maintenance, house keeping, cafeteria--all of them. There are signs on closet doors that read: night shift sleeping; do not open. I have seen those doors open at times, and there are tiny cots crowded inside. Most only have a small suitcase. There have been the same cafeteria workers serving three meals a day, every day. Food trucks didn't arrive on Friday due to high water, and cooks managed to improvise and keep us all fed. The meals, by the way, during this time, have been FREE for both employees and visitors. The hospital has updated us every day with well-written, easy-to-read emergency information flyers. Our care has been superb as usual. Wade's usual doctor is even part of the Ride-Out team. Our sheets are still changed. Our room is still cleaned. The pharmacy is still responding quickly to all medication needs. We are eating hot meals every day. We understand that all of this would not be possible without the planning and sacrifice of many. For this, we are forever grateful." ❤️ Douglas and Marla Chandler MD Anderson Cancer Center

The news reports from Hurricane Harvey's aftermath have been constant. Day after day we watch as exceptional people do extraordinary things. Rainfall has reached epic proportions and many have lost everything they own due to flooding, but still, kindness perseveres. And now, another hurricane is brewing in the Atlantic, Hurricane Irma.

I'm so thankful for those who choose to do the right thing even when they are inconvenienced, like the amazing staff at the M. D. Anderson cancer center. The American spirit always seems to rise under adversity. Soon, the remnants of the hurricane will have passed and things will return to normal but lives will be forever changed. M. D. Anderson has made an impact in a good way. Shouldn't we all follow their example....

A beautiful and interesting stranger

I'm a firm believer that nothing happens randomly in God's world. He orchestrates everything and His timing is always perfect. Today was a prime example of that fact. I was able to have a lovely one hour and 41 minute phone call with a complete stranger! Well, she's kinda sorta. The fact that we've never met in person makes her a physical stranger to me but we've corresponded via Facebook messenger and email for a couple of months so she's not a total stranger.

Some months ago, I received a Facebook message requesting information about an article I'd written. I always respond to those types of messages because I know God has used me in the past to minister His love to others and I always want to be available to help someone in need. It was interesting to me since I live in the sunny South and she lives across the country. Our paths would never have crossed other than with God's divine intervention.

As we talked, it felt like we'd known each other a long time. There was a common bond through our breast cancer stories but there was something deeper. It was a spiritual connection. We both knew and loved the Lord. It was so wonderful to share our faith and how that's impacted out journeys.

I'm sure we'll touch base again soon and our friendship will grow. I'm so thankful God cares about the little details in our lives as well as the big ones. His timing is always impeccable. I am so grateful for the gift of friendship even if it's with a beautiful and interesting stranger.

Accepting Results Gracefully

Yesterday was the big day. I was to receive the results of my bone scan. It had been a year since my last one, and I was nervous. I’d been having a lot of spinal pain and was concerned. I didn’t want to admit my worst fear – the fear of recurrence. After a lot of prayer, I finally resigned myself to the fact that the news was either going to be good or bad and there was nothing much I could do about it. I was determined to accept the outcome gracefully.

Seated in front of the oncologist, we went through the customary formalities of greeting one another. When that was out of the way, I sat on the edge of my seat. I wanted the test results. The doctor could tell I was eager and said she wouldn’t beat around the bush. I braced. I was prepared for the worst but expecting the best. Thankfully, I received the latter. As Dr. N shared the good news that there was no evidence of active disease, I was filled with joy. She could tell by the look of relief on my face that she’d given me a huge blessing. I thanked her and we moved on to the next subject, the one I knew was coming…Arimidex.

Dr. N asked if I was going to take the anti-hormone therapy. Since my specific cancer had been fed by estrogen and progesterone, she explained that I needed to do whatever I could to prohibit the production of those hormones. I listened as she explained the cancer could come back at any time if those hormones were not in check. I mustered up the courage to ask her a question. “Since I’m three years out and I’ve been doing everything naturally with wonderful results, is it necessary for me to take this drug?” She looked at me and said she wanted to show me something. Pulling her laptop onto her lap, she began to type. As she typed, I waited and wondered what she was going to show me. It only took her a few minutes to pull up the website. She entered some data and flipped the computer around for me to see. Pointing to the screen, she explained that she’d entered my age, the type cancer I had, the stage of my cancer, and the hormones that fed my tumor. After she’d entered that information, she’d clicked enter and the computer program had pulled statistics to indicate specific results. The results showed the percentage of women with breast cancer over a five-year period who’d not take anti-hormone therapy vs. women who had taken it. The recurrence possibility for both categories was assessed and displayed on the screen. As we looked together, the doctor and I saw that taking the anti-hormone therapy drugs only would buy me a 2 percent increase in life expectancy.

After reviewing the results, Dr. N expected me to make a decision. It was an easy decision for me. I looked her straight in the eyes and said, “My Daddy always said if it ain’t broke, don’t fix it. What I’ve been doing is working. You have evidence of it with my latest scan. I think I’ll continue to take the natural supplements and do exactly what I’ve been doing for the past three years. I don’t want to take Arimidex or any of the other anti-hormone therapy drugs.” The doctor smiled and nodded. I was surprised at her reaction. I expected to receive a dismissal as I had from my previous oncologist but as I asked if she’d continue to be my doctor, she answered in the affirmative.

It felt good to fight for my rights, although I hadn’t had to fight hard with my new doctor. It was my body and I was the one with the right to choose the treatment best suited for me. I’d tried three anti-hormone therapies in the past and each of them came with wicked side effects so I knew I didn’t want to travel that path again. The statistic chart did not impress me, although I was surprised to find there was such a thing available online and to know doctors use it. The program is called Predictor and you can find it by visiting this website. You’ll need to enter your age, tumor size, grade and other information. If you don’t have it all, enter as much as you do have but be forewarned, this is only a statistical tool. It is nothing other than that. It was interesting to see the results, but they did not affect
my decision. I’d made my decision right after I’d been given my Oncotype DX results.

Each person has to make their own choices. Do what feels best for you. Consult your doctor and make wise, informed decisions. If you don’t want to implement a recommended treatment, talk to your doctor and weigh the pros and cons. What’s worked for me may not work for you but I’m thankful my oncologist supports me in my decision. I’m blessed to be doing well after three years and I’m thankful to claim the status of NED right now. I could say if that ever changes, I’ll cross that bridge when I come to it, but why entertain negative thoughts? Today I am cancer free and hopefully I’ll be able to say that for years to come. God only knows what tomorrow holds. I’m glad I don’t shoulder that responsibility.

God Sent Mr. Browning

My signature on the gloves

I had been in a hurry to get to my appointment with the oncologist. Traffic in the mornings here is always hectic so I wanted to make sure and leave early. I grabbed a frozen smoothie, got dressed, put on my makeup and dashed out the door. I didn't have time to ready my Bible and have my devotional as I usually do but on my way to the center, I began to pray and asked God to give me a verse to hold on to today. I felt Him impress Philippians 4:13 on my heart, "I can do all things through Christ who gives me strength." So I meditated on that verse until I reached the center. (I had been nervous about getting the results of my bone scan but had surrendered the results to God and had told Him earlier in the day that no matter what they showed, I'd accept either good or not so good from His hand because I knew He'd have a purpose for either result and I trusted Him completely.)

Armband and nametag

When I entered the cancer treatment center, it was extremely busy. There were people everywhere. As I looked over the sea of people, I saw so many cancer victims in various stages of treatment. It made me sad to see there were so many gathered in one place and all I could think about were the hundreds of thousands across America that I couldn't see.

I made my way to the oncologist's office and sat down to wait. In the waiting room, chairs filled every few minutes until the waiting room was almost to capacity. The last couple to come in were African American. They sat down close to me and I smiled to greet them. I watched as the man pulled out a full sized Bible and I smiled realizing he was a man of faith. I assumed he was going to read to himself while his wife went back for treatment but was I ever wrong. Mr. Arthur Browning (all CTCA patients and visitors have to wear name tags) began to read Scripture aloud! At first, I watched to see how others in the waiting room reacted. There were some wh

o were visibly uncomfortable as they squirmed in their seats and cast disdainful looks in his direction. Others ignored him completely but I was extremely grateful! God sent Mr. Browning to personally bless me.

Sweet Mr. Browning reads the Bible

For about ten minutes, Mr. Browning read Scripture. When he was through, he and his wife closed their eyes to pray. (That's when I captured their photo) After he raised his eyes, I went over to Mr. Browning and whispered a quiet "Thank you." I explained to him that I'd been unable to read my Bible before coming and I was expecting to receive my test results today. Although I was unsure whether I'd receive a diagnosis of a recurrence of cancer or if I'd get a clear bill of health, his Scripture reading had blessed me and I wanted him to know it. He smiled a big smile and the medical assistant called Mrs. Browning back.

My turn came next and I went to talk with the oncologist. She didn't beat around the bush but got straight to my results. There was no evidence of active cancer!!! I was so thankful to hear that good news. My degenerative disk disease had gotten worse and the scan showed a herniated disk, two bulging disks, osteoarthritis, and arthritis in my knees and heels (weird, I know).

Although I'm struggling with the extreme spinal pain, I'm so grateful for NO CANCER! I have to continue to see the oncologist every 6 months unless things change but I am blessed and highly favored!!! I'm being sent to a spinal specialist to see if we can find a way to manage the pain so I'm hopeful. Thank you for your prayers.

The Never-ending Fear of Recurrence

The fear of recurrence looms overhead like a brown turkey vulture on a Georgia, hot summer’s day. Swooping and diving, she circles. I can feel her, a living presence. I walk daily in her shadow. Some days the ominous darkness overwhelms me.

I never thought myself to be a fearful person. I’ve always done my best to walk by faith, not by sight, but when the oncologist scheduled a complete body bone scan three years after my initial diagnosis, doubt and worry crept in. Thoughts I’d failed to consider became reality. What if? What if cancer returned? How would I feel? What would I do? The more I thought, the closer I felt the brush of her wings. I wasn’t ready.

Do all lives touched by cancer feel this fear? At diagnosis, does that great bird of destruction perch idly on shoulders waiting for an opportune moment? Do we carry her with us for days, months and years, unseen and quiet, or am I the only one sensitive to her nearness? Am I overly sensitive?

I’d prefer not to think about recurrence, but how do I suppress truth? One solitary cancer cell. That’s all it would take. Just one. Floating carefree in my system, reveling in the precious flow of my life’s blood. And that minute cell has the power to decide when, where, and if. It seems so unfair.

Cancer was an uninvited guest. I don’t know how or when it decided to reside in my breast. It could have been there for ten years or more according to the doctor. I never felt it. I had no idea until that fateful day in the shower. As my fingers trailed over my soapy breast, the hardness of the solid mass stopped them. The discovery life altering.

Tomorrow, I’ll go to the hospital. The technician will inject a radioactive tracer into my vein. The tracer will travel through my bloodstream and into my bones. A special camera will scan my body and take pictures. Areas that absorb very little of the radioactive tracer will appear as dark spots. These places could show a lack of blood supply to my bones or could indicate a problem. They could pinpoint a recurrence of cancer. Areas of increased absorbency will show up brightly. These are called hot spots and may indicate problems such as arthritis, tumors, fractures or an infection.

At present, the fear of recurrence is circling. She floats silently on the breeze feeling the updraft beneath her wings. As she dips and dives, moving ever close, I watch. In my mind’s eye, I see her clearly. She is hideously ugly. She is ravenous. She frightens me but I can’t spend my time watching her. There are things I need to do. I have a life to live.

Take one day at a time, wise advice I received years ago from a friend who lay dying. She was stage 4, metastatic. Her frame wracked with disease, yet still, she loved. She was the epitome of brave. A young mother with four little ones. She fought valiantly, but cancer fought harder. On the day she succumbed to breast cancer, I sat by her bedside. Our friendship touched by unbearable pain and suffering, I needed to be with her. The last words she said to me before leaving this earth still echo in my mind, “Take one day at a time, Bonnie, just take one day at a time.”

If there was one word I wish I’d never learned, it would be the word cancer. But to be ignorant of the word would not negate its power. I’ve been fearful, especially this week, as the bone scan looms in front of me but as I look up, toward that dark figure in the sky, I hear the words of my sweet friend whispering in my ear, “Take one day at a time, Bonnie, just take one day at a time.” And that’s exactly what I intend to do. I can’t worry about tomorrow. Today has enough troubles of its own. One day at a time, that’s all I can handle right now and that’s enough.

Dressing Challenges With Lymphedema

I’m going to make a profound statement and one that will more than likely be misunderstood by some, but for me, lymphedema has been more challenging than breast cancer. Now that your mouth is hanging open, let me explain.

When I was diagnosed with breast cancer, I had surgery to remove both of my breasts along with many lymph nodes. After several weeks, my scars were in the process of healing and I knew it wouldn’t be long before the wounds would be better. The physical aspects of surgery were pretty easy to deal with, but the aftereffects of lymphedema were not.

I didn’t develop lymphedema immediately after surgery. It took several months before I began to notice the uncomfortable swelling in and around my armpits. At first, I thought it was just accumulated fluid that would dissipate after elevation and rest. But the swelling got worse and did not disappear. After a visit to the breast surgeon, I was told I had lymphedema. As the doctor explained, it would be a lifelong condition, I was overwhelmed. I was prescribed compression sleeves and instructed to wear them daily to combat the edema in my arms, but I had no idea how this condition would impact my life for years to come.

Lymphedema is a collection of fluid that causes swelling in the extremities. It is often caused by trauma to the lymphatic system but can also be caused by surgery to remove lymph nodes. These important nodes filter lymphatic fluid as it flows through the body. They trap bacteria, viruses and other foreign substances which are then removed by white blood cells called lymphocytes. When the normal flow of the lymphatic system is disrupted, fluid can build up in the affected arm or leg and lymphedema can develop. Lymphedema is not a life-threatening condition, but it can have a major impact on the quality of life. Painful swelling can affect the movement and use of the affected limb and also cause distressing physical appearance. Increased arm or leg girth can pose clothing challenges.

Today, my breast cancer scars have healed completely and although I’m still under the watchful eye of my oncologist, I am considered to be currently NED (no evidence of disease). The only time I’m reminded of breast cancer is when I undergo periodic exams or tests. The lymphedema is with me daily. Each morning, I wake with painful swelling in my upper arms. As soon as I get out of bed, I go through my morning ritual of manual lymphatic drainage in an attempt to reduce the swelling enough to don my compression sleeves. After struggling with the tight elastic garments, I face another challenge. Walking into my closet, I look at dozens of blouses that I can no longer wear. Even with compression sleeves on, my arms are too wide to fit into normal sized tops. This is very discouraging and may seem a small complaint to others, but my physical appearance has already been so greatly altered, I don’t need another deformity.

My new peacock patterned sleeves

There aren’t many clothing options available for those who suffer from lymphedema. Since my lymphedema is located in both arms, I’ve found I have to opt for larger sized blouses to get the wider sleeves I need. This can make me look sloppy and unkempt. I don’t need a plus sized blouse but I do need the wide sleeves. Unless I choose to wear blouses with dolman sleeves, butterfly sleeves, or bell sleeves, I don’t have many options. It seems such a shame that there are no specific clothing designers who take into consideration patients suffering from lymphedema.
As I look at the blouses hanging in my closet, I see hundreds of dollars’ worth of clothing. The only problem with those tops is the arm width is too narrow for my affected limbs. If I could figure out a way to increase the girth of the sleeves, I could make use of my vast wardrobe. It doesn’t seem cost effective for me to take these blouses to a seamstress and ask for some type of elastic or spandex inserts to be added, but what other options do I have? I can continue to buy big, baggy plus-sized clothing or wear clothing styles that are out dated but provide the open type sleeves I need. If I lived in a climate where it was always warm, I could go sleeveless year-round and the dilemma would be solved but alas, that’s not the case.

Dressing challenges are a minor inconvenience compared to the constant swelling and discomfort I face on a daily basis, but it is something that greatly affects my life. In the cooler months of the year, large oversized sweaters and sweatshirts help camouflage my deformities and make me appear more normal.

Performing sentinel node biopsies and removal has become pretty standard practice in today’s world of aggressive treatment for breast cancer but is it absolutely necessary? Even if the cancer has spread to the lymph nodes, like mine did, is it really worth it to remove the nodes? Doesn’t the node removal cause more harm than good? And now, there are some very severe cases of lymphedema that warrant a lymph node transfer to help offset the horrible side effects of swelling and pain. It seems like a never-ending cycle to fix, repair and replace.

Breast cancer is devastating. Lymphedema is debilitating. Combining them both is overwhelmingly difficult and though there are many of us who will combat this troublesome duo, we do the best we can with the cards we’ve been dealt.

Whining about not being able to find anything to wear takes on a whole new meaning when it affects your identity as a woman. I apologize to those who may find my post offensive. It’s certainly not meant to be. I have suffered greatly. I have suffered not only physically but emotionally and spiritually. My life will never be the same. As far as I know, my dance with breast cancer is over, but I do have a bone scan scheduled for tomorrow and I could receive bad news. The lymphedema will be my constant companion forever so I hope you’ll indulge me and allow me to complain just a wee bit. I have no idea what I’ll wear for my test tomorrow and that kind of stresses me out. At least I know whatever I choose to wear I’ll only have on a short period of time. The medical team will tell me to remove my clothing and don a stylish hospital gown before I climb onto that cold exam table. Too bad hospital gowns aren’t in style. At least the sleeves are open and roomy.

Picking Out Bras and Prostheses, Again.

I never considered myself a naïve person, but when I was diagnosed with breast cancer three years ago, I had no idea it would impact me for the rest of my life. I thought I’d have surgery, go through treatment and be done. Then, when I made the decision to have both breasts removed, I didn’t know choosing not to do reconstruction would be such a challenge. There was so much I needed to learn.

Today was my annual visit to the prosthetic shop. Every year, for the past three years, I’ve made this trek. Forty-five minutes of driving to a neighboring town takes me to a tiny specialty shop. The clientele are breast cancer patients and survivors. Inside the shop are wigs, head coverings, bras and prostheses. The ladies who run the shop have been specially trained in bra fitting, so I feel confident going there. Today’s visit will be old hat, but I remember when it was all very new.

About a month after I’d had my breasts removed, the breast surgeon called me into her office for a checkup. At that visit, she examined my scars and before I left, she handed me two prescriptions. One was for mastectomy bras and the other was for prostheses. She explained that I’d want to get the items as soon as possible. I must have looked like a deer in headlights because she sat down and explained insurance normally covers four mastectomy bras a year and one set of prostheses every other year. I left her office feeling very strange. I had no idea prescriptions were required for bras and fake boobs.

When I visited the local specialty shop, I was embarrassed. I was so new to being breastless. Walking into the shop with a flat chest, I felt humiliated. As I approached the counter and handed my prescriptions to the salesperson, she smiled and welcomed me. She took me by the arm and led me to a fitting room where she measured me with a retractable measuring tape. She apologized as she held the tape against my scars. She could see how fresh they were and noticed my face during the fitting.

“Honey,” she said, “You’re too young to have had to go through this trauma.” I smiled and shook my head in agreement. I wanted to scream out, “You have no idea what I’ve been through!” But I didn’t.

I remember her showing me dozens of mastectomy bras. She explained the differences in them and showed me how to insert a pair of trial prostheses into the little openings on the inside of the bras. She was very knowledgeable and took her time. I was thankful for her patience as I tried on a variety of styles until I found one that worked for me.
When it came time to pick out my own prostheses, I began to weep. The fitter closed the door to the dressing room and told me to take my time. When she came back into the room, I was wiping tears from my cheeks. I apologized for being so emotional and she quickly put me at ease. She said I shouldn’t worry. She’d had many women react the same way. She explained she had expected me to cry since it had only been a month since surgery and if I hadn’t cried, she would have been worried. I was grateful for her kindness.

The first prosthetic I held in my hands was a silicone rubber flesh-colored mound. I was surprised at its weight. The smallest size, an A cup, was hefty. When I held the C cup, I could barely hold it in one hand. It was extremely heavy and I was afraid I would drop it. I was asked what size bra I’d worn before surgery. When I told the fitter I’d been a B cup, she smiled and explained I could now how my choice of cup sizes. She told me I could go as small or as large as I wanted to go. I tried each cup size on with a mastectomy bra and found the A cup to be sufficient. I couldn’t stand the weight of heavier prostheses against my scar. I paid for my purchases and left the store feeling shocked and overwhelmed.

That was three years ago. Today when I went into the store, I greeted the salesperson with a cheery smile. I explained I was there to get new bras. Instead of waiting for her to measure and fit me, I walked straight over to the racks of bras and started looking through them. I knew exactly what type bra I wanted and I knew what size I needed. Gathering the selections, I’d made, I carried them up to the counter. I pulled out my insurance card and asked when I qualified for a new pair of boobs. The fitter checked my chart and said I had another six months to go. I wanted to be sure I was within the correct time frame for insurance coverage so I didn’t purchase prostheses today although I did check out some new versions. This time, when I held the C cups in my hands, I laughed. I told the salesperson I was ready to go big. As my purchases were slipped into a bag, I said my goodbyes and reminded the staff I’d be back in six months for my Dolly Parton-sized boobs.

I’ve come a long way in three years. What was once a humiliating and embarrassing experience has now become commonplace. I know I’ll need to buy bras and prostheses for the rest of my life. I’m sure the next time I visit the store, I’ll feel even more comfortable than ever. I may even invite the fitter to join me for lunch! I’m sure we’re going to be really good friends a year or two down the road.

Making the best of a bad situation is always a good idea. The fear of the unknown can be crippling, and I know that’s why I had such an emotional reaction the first time. I’m so happy I’ve passed that initial phase of my journey, but I’d like to offer a word of encouragement to those about to make their first mastectomy bra or prosthetic purchase. The fitters want to help you. They are trained to help you make bra selections that will be best suited for your needs. Choosing a replacement breast can be difficult but replacing the weight of your missing breast will help your body adjust. Without replacing the breast, your body will try to compensate and this can often cause rounding of the shoulders and result in back pain.

Every insurance company is different, so it’s best to check your policy for coverage limitations. I always wait to visit the prosthetic shop until after I’ve met my yearly deductible, that way, I only have to pay my 20 percent. Be sure you have a written prescription for your bras and your prosthetic. Many insurance companies require this. If your doctor doesn’t volunteer a prescription, ask for one.

Living life without breasts doesn’t have to be difficult. I wear my prostheses when I want to and I don’t when I don’t. Most of the time, when I’m out in public, I wear a mastectomy bra and prostheses, but when I’m home, I find it more comfortable to go without them.

Think of all the choices you’ll have when you visit a shop for bras! There are just as many choices as there are in a normal lingerie store. If you want a sports bra, they’ve got them! If you prefer an underwire, no problem. Sexy, t-shirt, racerback bras…all available. The only difference between mastectomy bras and regular bras is that mastectomy bras have an inner lining type pocket that holds the prosthetic. Slipping the breast form inside the bra is quick and easy.

Prostheses come in different shapes, sizes, and weights. They’re available in silicone, polyester fiberfill and even microbeads. You have the power to choose what works best for you, so have fun doing it. Your first experience might be an emotional one, but subsequent experiences will get easier with time.

Ultrasound Results

We met with my new oncologist today. She's very nice and very professional. As she went over the results of the ultrasound, I was happy to hear there was nothing visible other than dense scar tissue. The pain I'd been experiencing was due to the regrowth of nerves in that area. Dr. Ninan explained it can take up to three years for nerves to regenerate and grow. Since I'm still having severe back pain, she wants me to have a bone scan next week. We'll discuss my treatment options depending on what that scan shows.

After we finished our time with the doctor, Phil and I wandered through the facility. I hadn't had a chance to learn my way around and the patient advocate assured me there were some areas I'd want to visit. We made our way up to the fifth floor to the rooftop terrace. There, patients had the freedom to lounge in outdoor breezes under the shade of the rooftop pergola. Comfy seating and complete quiet provided a getaway from the hustle and bustle of the downstairs areas. We also visited the chapel located on the second floor. This small worship area was beautifully designed and featured a lovely stained glass window. Worship services are held throughout the week and on Sundays. Phil was amazed at all the attention to detail in the center. He couldn't get over the fact that there was an onsite Hair Salon, Restaurant, Gift Shop, and Acupuncture center.

It was a good, productive morning. I was thankful he was able to go with me to my appointment. He's been having to work so many Saturdays lately, I was worried he couldn't go. It always makes me feel more at ease to have his moral support.