Doctors need to learn a thing or two

I've never been much of a fighter. I guess you'd say I'm one who doesn't rock the boat. I go with the flow. It's always easier that way and I don't like confrontation. But when I was treated unfairly at a recent medical appointment, I knew I needed to take action.

It had been six months since I'd seen the oncologist. During that time, I'd been doing fairly well. Sure, I'd experience the daily aches and pains that appeared shortly after surgery. Daily I've struggled with Lymphedema issues, but I've learned to deal with those inconveniences. They've seemed a small price to pay for the ability to continue living. But I was surprised, after months of unsupervised medical care, by my doctor's nonchalant attitude.

When she entered the exam room, she did not greet me. I noticed she didn't have my file in her hand either. Earlier in the day, I'd been sent for bloodwork and had waited two hours for the results. During that time, I'd been naturally nervous. It's always scary when you don't know your tumor marker number. I assumed the doctor would go over the lab results with me before asking how I'd been since the last visit, but she did not. In fact, she didn't say a word.

I waited a few minutes before speaking. I wondered if she was about to ask questions and I wanted to give her time to compose her thoughts. There was an awkward silence and when I realized she wasn't going to start talking, I spoke up.

It was important to mention the back pain I'd been experiencing. It wasn't normal and had increased over the past few months. This was very concerning especially since cancer can metastasize into the bones. While I was speaking, my oncologist seemed to be elsewhere. Her eyes were not focused on me and it was evident she was half listening. Wanting to give her the benefit of the doubt, I waited for a compassionate response after I'd shared my health concern. A few minutes passed and then the doctor said, "We could schedule an MRI but you should probably just follow up with your primary care physician."

I was dumbfounded when she turned to exit the room. She'd only been in with me a few minutes if that. Taking a deep breath, I bit my tongue. I could barely believe it.

On the way home from the appointment, I replayed the events in my mind. Trying to give the doctor the benefit of the doubt, I thought perhaps she'd had a bad day or her caseload had been heavy. But then, I started thinking. It had been six months since I'd seen her last. A lot had transpired since my last visit. The back pain was excruciating, the swelling from lymphedema in my arms had increased, my energy level was greatly diminished, and I hadn't been sleeping. Since the doctor was in and out like a flash, I hadn't been able to talk to her about all of my concerns. I'd only had time to mention the back pain.

Part of the blame was mine. I realized, after the fact, I could have asked her to wait as she put her hand on the doorknob to exit the room or I could have spoken with the nurse before leaving the facility and demanded more of the doctor's time, but I did not. It wasn't my place to push, or was it?

When I arrived home, I spoke to my husband about the day's events. He was as discouraged as I about the way I'd been treated. He asked what I'd like to see happen and that's when I realized I needed to make a change. It was time to find another doctor.

Where did I begin? As I flipped through my cancer care book, I remembered, when I'd entered the treatment facility, I'd been given the name of a patient advocate and had been told if I ever needed anything, she was the person to call. Great, a starting point.

Making the call was difficult. I tried my best to compose my words so as not to point fingers or place the blame entirely on the doctor. My intention was to give the facts and present my wishes.

The patient advocate was kind and caring. As I gave my viewpoint, she listened without interrupting. As I neared the end of my story, I said, "I guess we just aren't a good fit." The advocate asked if I could have any type doctor I wanted, what type I'd choose. I told her my choice would just be someone who was willing to listen, keep tabs on my health, and make sure I received the best care possible.

After giving her my "perfect doctor" requirements, I heard her smile over the phone. With excitement, she exclaimed, "I have the perfect doctor for you!" I listened as she described a new doctor who'd recently joined the cancer treatment facility. She assured me he had a wonderful bedside manner and would be sure to allow plenty of time for me during our initial consultation.

I'm thankful I had the guts to speak up and fight for my rights. It wasn't easy, but if I hadn't, no one else would have fought that battle for me. I feel confident I'll receive more personalized care with this new oncologist.

Sharing this story wasn't easy for me. I felt embarrassed and know some who read this may think I overreacted, but when a doctor fails to treat a patient with dignity and respect, they're doing a disservice to their patients.

Cancer isn't something you just "get over." Even after treatment ends, there's a lifetime of healing and recovery. Periodic medical attention is necessary to watch for signs of recurrence. Any doctor who doesn't understand this should not be practicing medicine in the field of oncology. 

Some days you just need to lie on the floor

The after effects of breast cancer can be overwhelming. It's been 1276 days since the cancer was removed from my body. That's 3 years, 5 months, and 27 days. You'd think, by now, I'd be really feeling great - that my body would have completely healed and I'd be living the good life. Surely, after this length of time, all the scars have mended and my body has learned to adapt to the physical changes, right? But that's not necessarily the case.

I'm normally not one to complain. Most days, even if I'm in pain, I keep it to myself. Why bother involving anyone else in my agony? They can't do a thing to fix it. Oh yes, the "I'm sorrys" help and those sweet empathetic pats on the back offer a little comfort but the suffering is mine and mine alone.

Some days are worse than others. Between the Lymphedema and the Fibromyalgia, I struggle. Neither of these two conditions will ever go away and that's frustrating.

The Lymphedema can be helped by wearing compression sleeves and using a programmable compression pump. The Fibromyalgia is helped by medication and by exercise, but I just long for the days when I used to feel normal. I haven't felt normal in a long time.

Before being diagnosed with breast cancer, my physical body was in fairly good shape. I did what I wanted to do despite the little aches and pains that came from daily exertion and growing older. I never really felt bad. Those days of good health were taken for granted.

So now I learn to temper my days and plan activities around how I feel. It's difficult to acquiesce to my body's needs, but I must. For some reason, I've always felt that I should be calling the shots, not my body but now, it's the other way around. My body dictates what I can and cannot do. Of course, I can always override the decision but it works out best if I listen and obey.

To be quite blunt, cancer sucks but even more than that, the after-effects suck. When I was told I had cancer, I was naive enough to think surgery would take care of the problem. For the most part, it did. The side effects didn't start showing up until several months later. Other than the physical and emotional scars, I never dreamed I'd have constant reminders of the trauma of breast cancer. Boy, was I dumb.

If you haven't been able to gather from my rant, today has been a difficult day. Last week, I decided to go off of the medication for the Fibromyalgia. I'd been experiencing some nasty side effects like blurry vision, loss of coordination, dizziness, and brain fog. There really isn't a specific medication that works for Fibro in case you didn't know. Doctors use various anti-depressants, anti-convulsants, or pain medications in an effort to alleviate the symptoms. While these medications help with serotonin uptake, overactive nerve endings, and sleep problems, they also bring with them their own parcel of side effects. It seems I'm always having to choose the lesser of two evils.

Lying on the floor seems to be helping. At least my body is prone and not moving. Tomorrow I think I'll start taking the medication my doctor prescribed for the Fibro again. It did help some with the physical pain and it did me have a more positive outlook.

If I could turn back the hands of time, I would have paid more attention to any and everything that could have potentially caused cancer to form in my body. But since I can't, I'll just have to learn to make the most of each day and be thankful I'm still alive.

More confirmation

The newest CTCA patient

 Today I headed back over to the cancer treatment center and received more confirmation that this is exactly the place God wants me to be right now. My first appointment was with the Naturopath. He was a very nice man and took a lot of time talking to me about helpful supplements to fight cancer. He was impressed that I'd done a lot of research already and that I'd been taking Ashwaghanda and Turmeric/Curcurmin for some time. He suggested I try boosting my Melatonin to help with more restful sleep and that I increase my Vitamin D3 dosage. He was very knowledgeable and I appreciated his input.

Next up was an appointment with the pastoral care department. It was so nice to walk into their beautiful chapel to meet with the head of the pastoral care department. We talked about the importance of spending time in prayer and relying on the truth of God's Word. It was nice to know this center cares not only about the patients and their bodies but also about their spiritual needs. I was impressed when they handed out a sheet of Scriptures on healing and a booklet on God's faithfulness.

A devotional in the waiting room

While in the pastoral care department, I met a nice couple from Pensacola. They had come up to the Newnan facility for treatment. I'm thankful I live close enough not to have to travel a long distance for care. Many are not as fortunate as I am.

After the pastoral care meeting, I was directed to the nutrition department to meet with the registered dietitian. They want to make sure you're not only eating well but making wise choices to benefit your health.

Next up was a meeting with my patient advocate. Each patient is assigned an advocate to be available during the entire time of their treatment. My advocate's name is Angie and she was extremely nice. She gave me a tour of the entire facility and explained what each department does. As I was touring the facility, I realized that this building and everything inside it represented a huge, self contained cancer bubble. Each doctor, each patient, each clinic, lab, or testing facility was all part of a community affected in some way by the far reaching tentacles of breast cancer.

During the meeting for patients with their advocate, I met a woman from Eastman, Georgia. Her name is Shirley. She's had a lumpectomy performed 3 times and her cancer keeps coming back. She was here for radiation treatments. I was able to share my experience with her and we exchanged numbers. She's staying onsite until her treatments are complete. I hope we'll have time to develop a good friendship before she returns home. I felt sorry for her because she's all alone in town. I'm hoping we can meet up for lunch on my next visit to the facility.

Shirley and I sat beside each other as the head of the Cancer Fighters group shared her testimony. My heart was touched as this lady shared how she'd endured cancer 3 times already and was currently stage 4. Though she's doing fairly well, she's on continued chemotherapy. She recently had the cancer return to her shoulder and had to have a huge section of her shoulder and upper arm bone removed. Each time I hear someone else's story, I realize how very blessed I've been thus far.

The ceiling skylight

Ultrasound area

I headed to the imaging center next for my ultrasound. I was thankful the tech offered me a warm blanket as she asked me to disrobe for the test. Lying on the gurney, I smiled as I looked up at the ceiling. Usually, while waiting for these types of tests, I get to stare at blank, acoustic ceiling tiles. Today was different. There was a lovely scene with blue sky, clouds, and flowers. I commented on it to the tech and she said many patients had complained about having nothing to look at so the center put in these attractive skylights. At least they listen to their patients and try to do what they can to make each test as pleasant as possible.

The exam room

I tried to look at the screen as the ultrasound tech was performing my scan but I couldn't see anything. She had the screen turned toward herself and I couldn't crane my neck far enough to get a glimpse. That's probably a good thing though. Patients don't have the skill or knowledge to know how to read the scans and we'd probably speculate on the findings before being told the results.

6 vials of blood!

After my scan, the tech left the room to get the doctor. I didn't know if that was good or bad, so I waited patiently. When the door opened and he came in, the first words out of his mouth were, "It's not bad news!" I was so glad to hear that. He said he always liked to give the patients an immediate statement if it wasn't bad news so it would put their minds at ease. I was grateful. Apparently the spot that's been causing pain is more necrotic tissue. I don't know if they're going to want to remove it like before or not. I guess I'll have to wait until I see the oncologist on Saturday.

At 12:00 I was finally done for the day. Thankfully I headed to my car. As I was walking down the hallway, an alarm sounded and all facility doors locked down. Lights were flashing and everyone in the hallways looked around with great trepidation. Nurses and doctors assured everyone it was just a false alarm and that perhaps some work being done on site had caused the alarm to be triggered. It was an eerie feeling to be trapped inside and with all the terrorist type activities around the country, I couldn't help but wonder if a shooter was on campus. It was a huge sigh of relief to know it was a glitch and after talking with an employee, I guess she could see how nervous I was so she offered to take me out the employee exit. I thanked her profusely and was so glad to get to my car and head home.

Locked down! Notice the closed accordion doors at the end of the hall.

When I got home, the first thing I did was take off my shoes and grab a tall glass of cold water. I was so thirsty! I'd forgotten to take my bottled water with me the hot sun on the ride home had made me realize how thirsty I'd been. What a day! One appointment after the other, but I was thankful to be able to attend each one in the same building.  This will certainly be more convenient than driving to three different doctors in three different cities.

Saturday I'll meet with the oncologist to hear her plan of treatment for me. I'm looking forward to it. Any doctor who's willing to meet with a patient on a Saturday is good in my book.

I can't believe I was so nervous about making the change to a new facility. Isn't that funny how change affects us as we get older? I find security in having things remain the same but God often uses change to help us grow. I'm so thankful for the opportunity to make the best choice for me and I'm glad I have access to good quality healthcare. There are so many who don't have that option. I'm also thankful for my husband's job and his good insurance. We are truly blessed.

The Power to Choose

Size c prosthesis and bra

Having both breasts removed was extremely difficult for me, but amid all the negatives accompanying breast cancer and surgery, there have also been some positives. I’d like to share one of those positives with you today. I’m hoping I won’t offend anyone. I’m sharing this with my tongue in my cheek because after all, we do need to look for some humor along our journey, don’t we? I don’t know about you, but I get tired of all the seriousness of breast cancer in my life. I’ve started looking for some more light hearted moments and today, I found one!

It was time for my check up with the oncologist. I’d made my appointment for the earliest part of the day because that’s when I’m most energetic. I wandered into my walk in closet and selected the clothing I’d wear to the appointment. I tried to find something lightweight and cool. After making my selections, I lay my clothing across the bed while I went into the bathroom to shower. I dried off and prepared to dress. Since having my surgery, I always start with the lower half of my body because the top half usually takes a little more time to get ready. Wiggling into my pants, I began to think about the day. I wondered what the Doc would have to say and what tests he might run. Finally, the bottom half of me was ready and I shifted my focus to the top half. I’d already picked out a blouse but hadn’t chosen a bra or prostheses yet. Smiling to myself, I suddenly realized I had the power to choose and not just the power to choose a bra, but the power to choose the size of my boobs!

The insurance company allows me to have a new set of prostheses every two years. When I chose my first pair of prostheses, I chose the smallest pair available. I’d always been small chested so why would I even think about choosing a bigger size, it would be unnatural…well, sort of. The fitter at the boutique advised me to remember my scars were fresh and my wounds were tender. She thought my choice of a smaller, lighter weight boobs was best. I was proud of my little size A fake boobs and took them home with care instructions. The majority of the time, I didn’t even wear them unless I was going out in public. It was more comfortable to remain flat chested at home. Two years passed quickly and I got excited when I found it was time for an upgrade. I returned to the boutique and asked the fitter to help me find a more substantial set of boobs. She asked my preference, B, C, D. I thought for a few minutes and picked a happy medium. I’d always wanted to be a C and now was my chance. After trying them on for size, I was overjoyed and left with my new bosoms.

In my chest of drawers were two sets of pink zippered cases. Inside each of these little round cases were my prostheses. In the top drawer were my little size A boobs. In the drawer just below it were my size Cs. Decisions, decisions. Did I want to wear the smaller, more comfortable boobs or did I want to really stand out and wear the heavier size Cs? I had the power to choose! I opened the cases for both sets of prostheses and lay them on my bed. I pulled out a size A bra and a size C bra. I stood staring at the boobs for a few minutes and decided today was a size C day! As I slid my C boobs into the bra a big ol’ Cheshire grin crossed my face. Cancer had taken so much away from me but now I got to choose. It was a really little choice, but it was mine nonetheless.

It’s so hard to deal with a post cancer body image. The scars and after effects of chemo and radiation leave such permanent marks on our bodies. Just knowing we have a tiny bit of power to choose how we look is amazing! I’m so thankful I was able to choose between two different sizes of prostheses and believe me, there’s a huge difference between size A and size C prostheses! HUGE!