Poor Health Care

Last night, I was taken to the ER with possible AFib. I didn't want to go in an ambulance because they cost so much but knew if we drove ourselves, we'd sit in the waiting room more than 6 hours before being seen. (Been there done that!) So I let them take me. 

Without going into all the details of ineptitude I experienced from hospital staff, I'll just say it was a very bad experience. I was at the ER until almost 2 AM (over 8 hours)!

It was freezing cold in there and I'm so glad I know how to unhook the machinery to get up and go to the bathroom, otherwise I'd have wet the bed. No one came to check on me regularly and I finally told them, at the 7 hour mark, that they could either discharge me or I was going to leave AMA. When I said that, through the call button to the nurse's station, I was told if I left AMA that Medicare wouldn't cover my ER visit. I checked on that and found it to be untrue so I called back and said if the doc wasn't there in the next 15 minutes, I was leaving. Funny how quickly that got their attention. 

I'm not nasty person but good grief. What happened to quality healthcare? Aren't nurses supposed to have hearts of mercy and want to have compassion on their sick or hurting patients? 

I always wanted to be a nurse when I was growing up. I have a heart for people. I wanted to serve them and be kind to them. But I decided a starting a family was more important. 

Our healthcare systems in the US are definitely not like they used to be. I think Covid had a lot to do with it. Many medical professionals left their jobs after the long hours and trauma they experienced then. I sure wish things would be like they were many years back where doctors and nurses loved their jobs and did their best to help others. Too bad we can't get housecalls anymore.

Annual checkup time

In 11 days I have to go for my annual checkup at the cancer treatment center. It's a visit I kinda dread and am kind of excited for at the same time. I dread it because I don't like being around the visual reminders that cancer is real and ugly and relentless. It's so hard to walk the halls of the treatment center and see the expressions on the faces of the men and women there. I can instantly tell those just beginning treatment. They look bewildered and lost while those who've become veteran cancer patients display expressions of boredom or frustration. 

The cancer center is set up like a bicycle wheel. The center of the wheel is the hub of the treatment facility where the administration team works. There are receptionists and administrative staff here. They greet guests, help with financial issues, give out directions, and do whatever they can to aid patients during their stay. The spokes of the wheel are specific medical services like radiation therapy, chemotherapy, imaging, holistic health services, the labs, etc. It's a well-organized building and patients learn their way around quickly. 

For the past few years, when I go for my checkups, I've felt out of place. I've even noticed other patients looking at me with that "what are you doing here?" look on their faces. On the outside, I look pretty healthy. I don't show outward evidence of ever being a cancer patient, but on the inside, they have no idea what I've been through. 

This week, I've had some concerns I know I'll need to bring up to the doc when I go for my appointment. I've been having terrible hip pain, deep in the joint of my right hip. It's been so bad I can hardly walk. I also found a large lump on the back of my neck. I don't want to think those are bad omens, but it's hard not to let my mind wander there. 

I'm sure, when I bring those things up at my appointment, the doctor will pay close attention. She will more than likely order some imaging tests. I'm due for a PET scan again, but if blood work looks good, they may not want to do one. I'm kind of hoping they do. I'd rather be on guard looking for potential problems than discover them too late and have to figure out what to do about them then. Being proactive just makes sense to me, cancer isn't something I want to gamble with. 

But I'm going to try my best not to dwell on the what ifs. You can't live in that land and hope to maintain your sanity. So, I guess I'll just keep on with my daily routine until my appointment comes and see what the doctor has to say. I'll keep you posted. In the meantime, I would appreciate your prayers. 

Sometimes Surveillance is Satisfactory

When survivorship becomes long-term, it can be an adjustment to move from active treatment to periodic surveillance.

Yesterday, I was scheduled for my annual visit at the cancer treatment center. Since my last visit, the center had been bought by another company. I was nervous about the visit, not only because it had been a while since I’d been there, but also because I would be seeing a new oncologist.

Front of the building

Since being diagnosed with breast cancer, I’ve seen several oncologists. For one reason or another, I hadn’t been with one for more than 2 years. I always found it difficult to see a new doctor but learned to develop a “nutshell” version of my medical history to present at each visit.

When I arrived at the cancer center, I lucked up and found a parking space close to the front door. The parking lot was packed and I was grateful, especially since I’d been having a lot of knee problems and walking was difficult.

As I entered the building, I wasn’t prepared for the anxious feelings that suddenly overwhelmed me. Standing in the lobby, I looked around. Some things were familiar but many things had changed.

At the registration desk, I received a schedule of my appointments for the day. It was going to be a long day. I would start the day with a visit to the lab, then I’d see a nurse for assessment before seeing the oncologist. After the oncologist, I’d see a naturopath and finally, I’d end the day in the physical therapy department as I was re-evaluated for lymphedema treatment.

First waiting room area

The lab visit was quick and a skilled nurse found the vein in my hand quickly. It would be an hour before my next appointment, so I found an empty chair in a quiet hallway and sat down to read. As I waited, I watched patients come and go. I felt uncomfortable. I didn’t look like the other breast cancer patients. I looked healthy and strong while they were evidently in various stages of treatment. Pushing down my feelings of survivor’s guilt, I continued to vacillate between reading my book and looking at my watch.

When the time came for me to head toward the oncology department, my anxiety eased a bit as I saw a familiar face. One of the administrative staff greeted me with a big smile and said, “I remember you!” Instantly, her kindness put my heart at ease.

Soon I was called back to meet with the new nurse. After a brief visit with her, I was placed in an exam room to await my new oncologist.

When the oncologist entered, she briefly introduced herself and then turned to introduce me to her scribe and a nurse. I was surprised to have 3 people attending me.

The doctor pulled up my medical records on her computer screen and began to read about my case. As she recanted the information to me, I was surprised when she said, “So I see here you underwent reconstruction…” Immediately, I interrupted her and said, “No. I did not.” She looked shocked that she’d received incorrect information. Though I was hesitant to correct her, I wanted to make sure my record accurately reflected my cancer journey.

Waiting room for the naturopath

 

After getting familiar with my case, the doctor asked about my current symptoms and whether I was having any problems. I mentioned a growth I’d found at my left clavicle. She quickly palpated it and ordered an ultrasound. I was glad she was concerned and proactive.

Next, I was sent to the naturopath. He met with me for about twenty minutes and gave ideas on how to combat my chronic insomnia. I enjoyed talking with him and left with a sheet of paper listing several companies that provided CBD products he thought would be helpful.

One thing I like about the cancer treatment center was its integrative and holistic approach to treatment.

View of the parking lot from the rooftop

 

The next stop was the physical therapy department. A new therapist asked about my lymphedema and went over treatment options. As she talked, I smiled and told her I’d been dealing with this for 9 years and I was very familiar with manual lymphatic drainage, dry brushing, and using compression garments. She laughed and said, “So this is really old hat to you?” I nodded and she told me to keep on doing what I was doing and I wouldn’t need to see her again unless something changed. 

After all my appointments, I wanted a few minute to decompress so I went up the secret elevator (the one only patients know about) that takes you up to the fifth floor. Up there, patients can hang out in a very private, quiet terrace area. I like going up there because usually there's no one there. It's a good thinking spot, but when I got there, two women were sunbathing and I didn't want to disturb them so I picked a quiet corner and took a few minutes to pray before leaving. 

I left the facility feeling conflicted. While I understood the importance of an annual visit, I still hadn’t gotten used to being under surveillance care.

When I first began treatment, I was seeing someone every few months or so. As time went on, my appointments were moved out to about every six months, and now, every year.

It was comforting to know someone was keeping a close watch on me but I would also have to keep a close watch on myself. That’s one reason I’ve learned, over the years, to pay particular attention to my body. Aches and pains are normal parts of aging but there are things that I need to watch like lumps that randomly appear or an increase in lymphatic issues.

from the roof toward the front of the building

The good thing about being under surveillance is knowing I’m only a phone call away from medical care. Though I won’t see the oncologist every few months, I’ll always see my primary care physician multiple times a year. If there’s something I’m not sure about, I can always ask his opinion first and if he thinks it’s something cancer-related, he’ll refer me back to the oncologist.

5th floor roof terrace hangout for patients

 

 

 

 

Being under surveillance takes some getting used to. I like the freedom of knowing I don’t have to report in for treatment constantly but I’m not quite used to returning to my post-cancer life. I guess all good things come in time but I still don’t understand why the oncologist won’t say I’m completely cured. In my heart, I don’t believe cancer will ever be a part of my life again even if cancer care continues to be.

It’s such a blessing to know I can finally live my life without the constant fear of recurrence. It’s taken me 9 years to get to this point but boy, it sure feels good.

Backtracking isn't always a bad thing

I've always been a person who liked to move forward, even when the path was difficult. As an avid hiker, I'd rarely waste time researching trails even though trail guides provided a lot of information regarding difficulty levels. If I'd given a little time to studying those maps, I could've saved myself a lot of trouble. Sometimes a trail ended up being more strenuous than I expected and my aging knees balked. Other times, I'd find myself on a very unfamiliar trail, only to have to back track when I got off course. Nowadays, many hikers use portable GPS devices to pinpoint their location. I can barely follow Google maps and heaven forbid if I find myself in a dead zone. I can get lost really fast. 

Navigating isn't my strong suit, but since I like to hike, I do. Even though I don't use a GPS, I do try to be cautious and protect myself from injury. I wear sturdy shoes. I take along extra water, rain gear, and a few snacks. I also notify family where I'm headed. 

Serious hikers, like my cross-trekking friend, Marie, use pacer poles. On a recent trip to Israel, she introduced me to them. Though we weren't hiking through the mountains the entire trip, we were hiking over rough and uneven terrain. Even in the city, traveling over thousand-year-old bedrock, the stability those adjustable metal poles provided was so helpful. I felt more safe and secure using them to maintain balance. Thinking about those poles today made me realize how much I wish I had pacer poles for navigating cancer. 

When I was first diagnosed, I didn't know where to turn. We'd just moved to a new city and were barely established. I hadn't even had time to unpack all the boxes before my calendar began to fill with medical appointments. I used the internet to find an OB/GYN. That doctor led me on the most treacherous path I'd ever taken. From her office, I was referred to a breast specialist and then, to an oncologist. 

As time went on, though I received good care with those doctors, I felt I needed more. When a new cancer treatment center was built ten miles from our home, I decided to check them out. It was a new concept in cancer care. They provided everything in one location - imaging, chemotherapy, radiation, infusion, also a gym, library, massage, chiropractic, acupuncture, nutrition, and even a chapel. Ditching the other doctors, I applied for healthcare with the new treatment facility and was happy to be accepted. At that time, only a certain percentage of city residents were accepted due to the center's policies. They were a regional facility and one of 5 locations spread across the United States. It was important they keep some spots open for out of state residents, too.  

The cancer center was wonderful, and I loved receiving integrative care there, but when my oncologist, Dr. H left, I felt abandoned. Of course, I was assigned another doctor shortly thereafter, Dr. M, but he didn't know me or my history. I felt uncomfortable and decided to go back to the original team. They asked for records from the treatment center and scheduled an appointment for me to become reestablished as a patient with their practice. 

When I went in for that appointment, I felt like a fish out of water. Though everyone was nice, nothing was the same. Dr. F, my first oncologist, had moved on and once again, I was assigned another doctor, Dr. P. At my scheduled appointment, I saw a nurse practitioner for about twenty minutes and Dr. P for five. It didn't feel right, and I didn't like it.

Six months have passed since that visit, and I've been ruminating. I really liked the care I received at the cancer treatment center. They focused on all of me, not just my physical well-being. The integrative health care approach was appealing, and I'd missed it, so I called the center and asked how to restart treatment there. 

The scheduler hesitated when I explained my situation. She'd never had anyone leave and request to come back months later. She was cordial and promised to pass my information on to the patient care team. She gathered pertinent information and after we finished our conversation, I felt flustered. I wondered if I was being unreasonable wanting to back track my cancer care or if it my right to do so? If I'd been hiking and missed a turn off, I'd have backtracked as soon as I realized I'd gotten off course. What was the big deal about doing the same with cancer care? Didn't I deserve to have the very best care available? Certainly, anyone would understand my plight, right? But I wondered if they might think I had a few screws loose. 

Now I wait for the phone to ring. I'm hoping the cancer treatment center will re-enlist me as a patient. If they want me to grovel, I'll do it. It feels a little like I'm a spoiled rotten kid. I want things my way and I want them now! But that's not exactly the way it is. All I want is a doctor who spends time getting familiar with my case and doing whatever necessary to insure I enjoy a long, healthy future. I'd like to remain with the same physician for a very long time and have a good doctor patient relationship. The doctor, in essence my human pacer poles, would help me stay on path with surefootedness. 

Navigating cancer care isn't always easy. At times it doesn't seem to make sense at all. When the path meanders into uncharted territory, patients can easily feel unsteady. But it's okay to go back a few steps if necessary and start over again when you must. 

I may end up being the poster child for indecisiveness, but at least I'll be confident in my health care team's abilities. Being able to choose what's best for me matters, no matter what others think. 

Could Supply Chain Issues Negatively Impact Cancer Care?

With the recent supply chain problems, people all over the world are finding themselves in precarious situations when things they need and rely on are unavailable.

A recent trip to the grocery store opened my eyes in a big way. Many of the shelves were empty and the ones that did hold product were sparse. News reports and social media outlets have been reporting on supply chain issues for months. I hadn’t really given them much thought until I was an eyewitness.

As I wandered through the store, picking up essential items, I wondered what would happen if one day in the near future, we weren’t able to have access to necessary medications? I wondered what would happen if I couldn’t get my blood pressure medication? Would it spike rapidly causing an emergency room visit for intervention? And what about my thyroid medication? What would happen if I couldn’t get that? I don’t have a thyroid gland and need the hormone to make my body function properly. Thinking about those two possibilities scared me, but also caused me to think on a grander scale. What about those depending on chemotherapy medications to fight cancer? What would happen if they weren’t able to go for their infusions or receive maintenance medications like Tamoxifen?

Though I’m not currently using any cancer medications, I know people who are. Those people are in various stages of treatment, and I can only imagine how life would drastically change for them if they were unable to have the medication needed due to something out of their control.

As I began to research this potential problem, I was shocked to find several articles corroborating my worst fears.

It seems medication shortages began when Covid 19 hit and many cities in China were shut down. Since China manufactures many of the pharmaceuticals used by America, we began to feel the effects rather quickly. Then, a large pharmaceutical manufacturing company in Israel, Teva, closed causing even more problems.

The FDA began listing medications that were in short supply and among those were drugs used in chemotherapy and other serious health conditions.

In a 2021 a study conducted by the American Society of Clinical Oncology (ASCO) oncology drug shortages were reviewed. The study noted five oncology drugs in short supply including epirubicin, flutamide, decitabine, mechlorethamine, and dactinomycin. Those drug shortages along with more recent ones, such as the drug Abraxene, caused some patients in Alaska to postpone lifesaving treatments.

The FDA maintains a database of drug shortages. Looking at the list is disheartening as many medications currently show a status of low supply. So, what does a person fighting cancer do when unable to obtain medication to treat the disease? Do they seek alternative methods or wait out the storm hoping for a quick resolution?

In many cases, alternative options aren’t available, but for those willing to do whatever necessary to survive, consulting a trained naturopath may provide helpful tips or options.

Supply chain issues are becoming more concerning day by day as the availability of diesel fuel becomes sparser, gasoline prices rise, and goods are disappearing from the shelves. Though grocery items are probably more noticeable than medical supplies to the average joe, we’d better be paying closer attention, especially when it comes to our health concerns.

Out of curiosity, I wandered to the pharmacy section while visiting big box store and took stock of the supplies there. I thought it wise to pick up a couple of bottles of Acetaminophen, some antacids, and other over the counter medications just in case I needed them for future use. Those items should be staples in every household for common health issues but don’t do a thing for more serious problems like those related to cancer. I didn’t expect to see such low quantities on the shelves. Though I didn’t need anything urgently, I picked up some extra boxes to pad my emergency supply at home.

My heart goes out to those currently undergoing cancer treatment requiring medication. I can’t imagine how frightening it must be when they consider the possibility of not being able to have their treatments as scheduled. It would be a real shame to go in for treatment only to be turned away due to lack of supply. Let’s pray a solution can be reached before conditions become dire.

 

Cancer the gift that keeps on giving - the high cost of cancer

There's a basket of bills sitting in the corner of my bedroom. I try not to look at it as I enter the room but I know it's there. Its contents spill out onto the floor whenever my husband stuffs another bill into the basket. Usually, when the mail comes, he gets it first so he can filter what I see and what I don't see. Since he's the only one working, he takes care of our financial responsibilities and while I'm thankful for that, I'm not ignorant about our mounting bills.

Cancer is expensive. Even if you've reached maintenance phase, it's costly. There are always tests to be run, blood to be taken, doctors to see. It never ends. Just knowing this will be a continual process for the rest of my life frustrates me and the alternative, death, will be my only way out.

It would be nice to know that cancer could be a once and done kind of thing but that's only wishful thinking. Everyone knows cancer is a long and very involved illness.

I had no idea cancer would be as expensive as it has been. When I was first diagnosed, I was clueless. Maybe I thought naively that our insurance would take care of everything, but it hasn't and it won't. Maybe I thought when I reached a state of remission, the bills would end, but they haven't. And now, since most insurance companies have raised their deductibles, it only gets worse.

Just the other day, I called my oncologist's office to see if it was possible to reschedule an appointment for February 2019 to this month. I explained I'd finally met my deductible and was hoping to get in under this year's insurance. I knew if I could manage to reschedule the appointment I'd only have to pay my 20%. The scheduler shot down those hopes as she "regretted to inform me that the doctor's schedule was completely booked through the end of the year." GREAT...JUST GREAT. So in February, I'd be paying the full fee because my deductible wouldn't be met.

With only one income, it's hard to pay extra expenses. Many times, we do without necessities in order to pay medical bills. We've made arrangements to pay on every single one but sometimes, they get tired of waiting and turn us over to collections. You can't get blood from a turnip, as the old saying goes. We do what we can with what we have and that's all we can do. And don'tcha think that just maybe all the stress that comes from worrying about paying for treatment might eventually contribute to a recurrence of cancer?

Thankfully, we have good insurance but for those without insurance, I'm sure the high cost of cancer is overwhelming. It's not fair, that on top of getting a horrible disease, we also have to pay big bucks for the treatment of it. But, that's what you do if you want to live, right? We have no choice. And maybe, just maybe that's why there's no current cure for cancer. After all, treatment for cancer brings in the big bucks, ya know?!

Patting myself on the back

It feels so good to know you've made a good decision. When I fired my last oncologist, I wasn't sure I was making the right decision. It's scary to walk away from a doctor's care, but it was absolutely necessary in this case to do just that.

Today, I met my new oncologist. What a gem! He was so pleasant and nice. His eyes twinkled as he spoke to me. I knew it was a good fit when he sat down and asked me what he could do for me. He wanted to know how he could help make me more comfortable. What a first! I've never had a doctor ask me that before.

I was impressed that he took time to pull up my chart on his computer and as he did, he asked me to correct anything that was incorrect. He read through all of my records and after he'd done that, He came over to examine me. Before he began, he took time to warm his hands. What a gentleman!

His nurse sat in the corner jotting down notes as he went over my body. As he worked, he asked me if there were specific areas that were bothering me. I mentioned the tenderness underneath my scar, a spot to the right of one of my chest radiation tattoos, my spinal pain and of course, the lymphedema. After thinking for a few minutes, I also added the insomnia.

Dr. H addressed each area of concern. He ordered an ultrasound, an MRI with contrast, and he's sending me to a lymphedema specialist.

After 45 minutes, he was ready to move on to his next patient. Before he left, he turned to me, smiled a huge smile and thanked me for trusting him to be my doctor. He gave me his business card and told me to contact him if I needed anything.

His nurse stayed in the room for a few minutes and another nurse joined us. Both of the ladies wanted to talk to me for a few minutes. They asked me if I was pleased with the doctor. I assured them I was. They told me Dr. H is one of the best on staff at the cancer treatment center and explained he is always happy go lucky. Neither of them has ever seen him upset, angry, or sad. He was good to his employees and wanted the very best for his patients. The ladies were very sincere in their comments about him and that made me feel like I'd made a good decision to change doctors.

When I left the exam room, I smiled. Finally, I was going to get the care I deserved. I felt confident in Dr. H and his team. 

What a difference. Dr. N had been brusk and inattentive. Dr. H had been open, approachable, and friendly. Dr. N hadn't given me 3 minutes of her time. Dr. H gave me 45 minutes. Dr. N didn't go over one of my lab tests or records. Dr. H went over every single one of them.

It's important to find a doctor who fits your needs and if that means going "Doc Shopping," then so be it.

On my way out of the treatment facility, I found a handpainted stone with the word, "Hope," on it. How appropriate and what perfect timing! Yes, I do have hope in a brighter tomorrow with no cancer!

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.

Everything happens for a reason

I've always been a firm believer that everything happens for a reason and everything that happens is ultimately part of God's perfect plan for my life. Of course, some things that happen happen because of choices we make and some things happen because of choices we did not make but each choice, whether wrong or right, takes us down a path that God has allowed. Sometimes He allows the path to be used as a teaching tool. Sometimes we learn the lesson and sometimes we do not but, if we remember, each thing that touches our life has to first come through the mighty hand of God, then each thing should be received as a gift. I choose to look at life this way although there are many who do not agree with my perspective. 

For some time now, I've been feeling like I needed to make a change in my medical care. Earlier this week, I took the first step in that process and started the ball rolling. I contacted Cancer Treatment Centers of America because I felt I deserved better care than I was getting from my current oncologist. I could have stayed with my current doctor. I've been his patient for the past three years but something in my gut was telling me it was time to make a change and I've learned to listen to my gut (actually, the prompting of the Holy Spirit is more accurate terminology) because when I listen, I always reap the benefits of making a wise decision. 

Today, I spent an hour on the phone with my nurse navigator. CTCA (Cancer Treatment Centers of America) assigns each patient their very own nurse to help them navigate through all the testing, paperwork, questions, etc. throughout the time they are under the care of any medical staff at their facility. My nurse navigator's name is Crystal. She was extremely nice and very professional. We went over my medical records which included medications, tests, reports, surgeries, and personal history. As I went over each item with her, it was as if I were back at the beginning of my breast cancer journey. I was surprised at all the emotions that came creeping up as we talked. There were several times in our conversation that I had to fight back tears and as I did so, I began to experience a little doubt. I wondered if I was doing the right thing leaving the oncologist, breast surgeon and radiation oncologist that had taken care of me for the past three years. They'd been good to me but if I had to rate them on a scale of 1-10, I'd give the oncologist a 2, my radiation oncologist a 4 and my breast surgeon a 9. 

I wondered as we wrapped up the conversation how my medical team would feel when the folks at CTCA contacted them for all my medical reports. Would they feel betrayed? Would they wonder why I was leaving? Would they even care? I'm sure patients leave practices all the time under normal circumstances but I was abnormal. Cancer makes you abnormal. And even as much as I'd like to be normal again, I'm glad I'm not. 

My nurse navigator said I'd more than likely have a bone scan as soon as I start treatment there next week. I've been having a lot of pain in my thoracic spine around the T7 and T8 vertebrae. She said they'd probably want to repeat a chest ultrasound too. When I mentioned my desire to continue my natural health care regimen, she told me she needed to speak transparently with me. I knew what she was going to say before she said it. She said since my cancer was fed by Estrogen and Progesterone, the doctors at the center would more than likely put me back on adjuvant therapy. That means oral chemotherapy and that also means it will probably be one of the three drugs I've already tried - Arimidex, Aromasin, and Tamoxifen. I mentioned the bad experience I'd had with each of them and she assured me the doctors would manage any side effects with other medications or they may even put me in a clinical trial. When asked if I would be okay with that, I answered in the affirmative. 

Truth be told, I'm nervous about what the future holds. The fear of recurrence is always in the back of my mind. I talked to the nurse about the insomnia and anxiety I've been experiencing and she made a note of it in my chart. Over the next couple of days, my new medical team will meet to discuss my case. On Tuesday, when I go in for my physical assessment, they'll have even more information to review. Wednesday, there will be more testing and I'll meet my new oncologist on Saturday. Yes, Saturday! At CTCA doctors work on the weekends and it's not an abnormal thing. 

CTCA believes in integrated treatment. They have a naturopath, a spiritual advisor, a nutritional counselor, a mental health advisor, and of course, the medical team which includes the oncologist, nurses, therapists, etc. 

I'm a wee bit anxious about what comes next but I'm doing my best to trust God and leave everything else up to Him. I can't control any of it anyway, so why worry about it, right? So, we'll see what happens and where all this goes. Right now the path is dark and unclear. I feel like it's a winding path through a dense, brush filled forest. I'm standing at the head of the path looking down through a tunnel of overgrowth. There are thorns and thistles on both sides of the path and the road is rocky underfoot. I've taken the first step by deciding to leave my present team, now I need to be ready to move forward when the time comes. Next week, it will be time to venture a little further on the path. If you care to follow me on my journey, check back often for updates. I'm sure there will be many. 

The willow which bends to the tempest,
often escapes better than the oak which resists it;
and so in great calamities,
it sometimes happens that light and frivolous spirits
recover their elasticity and presence of mind sooner
than those of a loftier character.
- Albert Schweitzer

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.

Pain and more pain...physical therapy

After the bone scan revealed no evidence of a recurrence of cancer, my oncologist decided I needed to have physical therapy to help with my spinal pain. I was hesitant to even talk about physical therapy because I had no idea what they might do to me, but agreed to allow his nurse to go ahead and set up the appointments. Yesterday was my first visit to the spinal center.

When I arrived, I sat in the waiting room with a dozen other people. I noticed how hard the chairs were as I was waiting to be called back for therapy. If I'd been in charge of ordering the office furniture, I would have made sure to buy comfortable chairs, especially since most of the clients would be experiencing some level of pain as they waited, but that was just me.

A small section of the therapy room

I was called back and taken to a small cubicle with a draped curtain hung from runners in the ceiling. The curtains were wide open and I felt rather small sitting in the corner surrounded by all sorts of therapy equipment. Several staff members walked by and each of them smiled offering up a greeting as they passed. At least the therapists are friendly, that's a definite plus! A few minutes later, my personal therapist arrived and introduced himself. A tall man in his mid to late 50s stuck out his hand and said his name was Russ. He pulled up a rolling stool and sat inches away from me as he went over my history. A worried look crossed his face but he didn't say a word. I beat him to it and said, "Yeah, I've had a pretty rough couple of years." He smiled and told me he was about to say that very thing. After going through the list of medications, surgeries, etc., Russ asked me to put on a gown. He pulled the curtain closed and said he'd return shortly. As he was leaving, I asked if he wanted me to remove EVERYTHING, and he said you can leave on your bra and everything from the waist down. I asked if he was sure...I said, "I mean, I have no boobs so I need to know if you want me to remove my bra and prostheses too." He paused and said, "No, that's okay. Leave them on."

As he approached the curtained wall to my area, Russ said, "Knock, knock." I gave him permission to enter and he instructed me to lie face down on an exam table. I told him it might be a little difficult since I hadn't been on my stomach in some time. He went to grab a couple of pillows to help make me more comfortable and I was glad he did. With the pillows tucked firmly under my chest, I was able to lie on the table without much difficulty. Russ explained what he was about to do. I felt his large fingers unhooking my bra and knew he must be a little embarrassed so I offered up a joke. He laughed and breathed a sign of relief. He began to give me a very firm back massage. I didn't realize how badly my back was hurting until he started working on it. His hands were very strong and I don't know if it was just me or if he was massaging my back a little harder than he ought to be, but it was painful and I cried out. He asked if he was hurting me and I explained there were several areas that were more sensitive than others. He apologized and said he'd be more careful but if I needed him to lighten up just to let him know. I have a pretty high pain tolerance so I allowed him to continue. He couldn't see the tears in my eyes as he was working and I didn't complain. After the deep tissue massage was complete, the therapist explained he was about to begin a process called "cupping." I had no idea what cupping really was although I'd seen it in a movie. I wondered why the spinal center would use a treatment commonly practiced in China. I hoped this guy wasn't into a lot of mumbo jumbo. I needed real relief for my spinal pain and my insurance company wasn't going to pay for some off the wall treatments.

Slowly and deliberately Russ placed small glass cups on my back suctioning them in place. He instructed me to just lie quietly and after about 15 minutes, I felt him removing the cups. My back was really tender and he said I'd probably notice some redness or bruising in the next 24 hours. He followed the cupping session with spinal manipulation, rolling, and pinching. I had never suffered so much physical pain with my back before and wondering what in the heck I'd gotten myself into! I had come to be relieved of back pain not have it exacerbated. I was instructed to get dressed after Russ had applied a good layer of BioFreeze to my back. He said that would help with the discomfort. Watch a video of cupping here.

The cupping set he recommended

When I was dressed and ready, Russ showed me the cupping set and asked if I thought my husband would be willing to do it to me. He said I needed to have it done every 3 days. I asked what the purpose of it was and he explained the suction and negative pressure provided by cupping can loosen muscles, encourage blood flow, and sedate the nervous system (which makes it an excellent treatment for high blood pressure). I assured him I'd ask my husband if he'd mind doing this at home and felt sure my husband would be willing to agree to help. Russ told me I could find an inexpensive set on Amazon.

On the way home, I noticed my back was very uncomfortable. Just leaning against the seat of the car was challenging. I couldn't wait to look at my back in my bathroom mirror. I was sure it was red and angry looking.

My back after one cupping session
(don't pay attention to the tattoo!)

My back continued to hurt more and more as the evening wore on. When it came time for bed, I was nervous about laying down. As I did, the pain was unbearable and I needed to prop myself up on pillows to get comfortable and take a pain pill.

Today, I continue to have back pain. I feel like I've been in a really bad fight and I lost! I'm hoping a hot bath will help and maybe I can get my husband to apply a little more BioFreeze to numb the pain. I'm not so sure I want to go back for therapy next week. If it's going to hurt this bad, I'd rather just deal with my regular back pain.

© bonnie annis all rights reserved

Ring that bell!

It's been exactly 20 months since I completed 28 rounds of radiation. At that time, Piedmont Radiation Oncology was located in an older facility. (They moved to the main hospital about a month after I completed treatment.) While at the new facility today for my checkup, I noticed a beautiful, gold bell on the wall. The receptionist told me it was called a "battle bell." Typically, she said, when a breast cancer survivor completes treatment, she rings the bell and everyone in the office hears it and applauds. There had been no bell in the old facility so I never had the honor of ringing it. When I completed treatment there, my only reward was knowing radiation was over and being handed a certificate of completion. 

Me ringing the battle bell at the radiology office

As I was admiring the bell today, the nurse asked if I'd like to ring it since I'd never had the chance when my treatments were completed. I smiled the biggest smile and she asked me to give her my phone. (I hadn't intended on really ringing the bell since it'd been 20 months since I had finished up, but just as she was about to take the photo, I figured why not?! I'd earned the right to ring that bell and I was going to do it.) I grabbed the rope and gave it a firm swing to the right. When I did, the bell pealed and a loud, beautiful sound resonated through the office complex. Everyone who heard it came out of their offices and gave me a big round of applause. I felt so humbled and so honored at the same time. It was amazing and was the perfect way to end my morning of medical visits. I was even happier when I was told I didn't need to report back for one year! Now if I can just get the same good news when I go my oncologist at the end of the month...I'm keeping my fingers crossed!

© bonnie annis all rights reserved

Washing the toxins away

The sign outside my treatment room

Another day of Lymphedema therapy! I am so tired of going for these appointments. The frustration comes from not only having to drive an hour each way to the Piedmont Hospital Physical Therapy/Rehab Center but also from having to lay on the treatment table for an hour while the therapist does her thing. I feel really weird having a woman rubbing and massaging my body parts! That's probably why I've never gone for a professional massage in my whole 58 years of life. I know massage is supposed to be really good for you and is supposed to be a great way to receive relaxation for overworked muscles but if I had my way, a man would be working on me! Lisa, my CLT (Certified Lymphedema Therapist) is nice. She's kind, caring, and personable. If we didn't have a professional relationship, she'd probably be a good friend of mine but as fate would have it, she'll only be in my life a short time to help me with post breast cancer side effects.

My lovely treatment "bed"

The drive to the rehab center was uneventful this morning, but thankfully there wasn't a lot of traffic like there as on Monday. I enjoyed meandering through the countryside and seeing all the beautiful farm land between my town and the hospital area. There are some beautiful old barns and a lot of pretty wildflowers. My thoughts wandered as I was driving and the time passed fairly quickly. Before I knew it, I had arrived and was parking in the lot next to the rehab center. I signed in and took my seat glancing around the waiting room to see how many people were waiting for treatment. There was an oriental woman with a laptop busy making her to-do list shorter. I overheard her conversations because she wasn't shy about speaking on her cell phone in public. I learned she had termites in her home and was trying to find out what to do to get rid of them. She also was trying to make appointments with appliance repairmen to come to her home. They didn't have appointment times she preferred so she said she'd call them back. Although it was evident she was used to working diligently to get things done, she sounded frantic and scared, poor thing! There was a woman newly diagnosed with Diabetes who'd come in for a class on how to eat properly without sugar, a woman with an evident leg injury, and a woman in severe back pain. I watched as she tried to walk to the restroom and I hurt for her as she hunched over taking one painful step after another. The woman who really touched my heart was one with Lymphedema in both arms (just like me). Her arms were HUGE and I had to thank God mine weren't even close to being as bad as hers. Poor thing! She probably was very self conscious. She'd had to wear a sleeveless shirt because of the girth of her arms. As I continued to people watch, my therapist walked into the room and nodded toward me. She smiled and asked if I was ready. I shook my head and told her yes. She was assisting a young man on a walker and asked me to go ahead to the room and get my hospital gown on, so I did. A few minutes later, she appeared and got to work. 

Me in my hospital gown

As she worked on my arms, we talked. I learned her husband works for Delta as a flight instructor and she'd been an occupational therapist for 28 years but had just begun specializing in Lymphatic massage a few years earlier. She had two children in college, a sister and several brothers. Her parents lived in Daytona Beach, Florida, and her in laws lived in New York. It's amazing how much people enjoy talking about themselves! All you have to do is give them a little encouragement and they'll talk for a long time. I guess that's one of the reasons I've always enjoyed counseling...I love listening to others talk about themselves.

Our hour went by quickly and as the time ended, she made sure I knew how to do the manual lymphatic drainage at home. I assured her I felt comfortable enough to do it on my own and she wished me a good vacation and we said our goodbyes. On the way home, I started to feel extremely tired. I didn't understand why because I hadn't really done anything other than have treatment. After lunch, I looked on the internet trying to find a reason for my sudden exhaustion and was thankful when I found it natural to feel fatigue after lymphatic drainage. This is referred to as a Herx reaction or "detox reaction." As toxins are released from tissues they move to the organs to be eliminated from the body. They can cause discomfort or general feeling of yuckiness. I wish I'd known there are things you can do before treatment to help make it a little easier on your system. These are things I found on the internet that help decrease fatigue after treatment: 

Chart of the Lymphatic System

• Drinking a lot of water before AND after the lymph drainage session
• Taking "binders" as prescribed by your physician immediately after the session (e.g. charcoal)
• Drinking more water
• Light aerobic activity (e.g. walking or rebounding)
• Colonic hydrotherapy
• Drinking even more water 
• Rest

While some people report feeling amazing after moving toxins out of their bodies, others have more toxins and may feel a little less than amazing while the toxins that were mobilized are vacating. The lymph system will continue to feel the effects for 24-36 hours after treatment. 

No wonder I felt so wiped out when I got home! Who knows how many toxins had been released into my body after the lymphatic massage therapy. I called my oldest daughter, (a great self taught naturopath) and asked her what she recommended. She told me to rest and drink lots of water with lemon. She said the lemon would help eliminate the toxins from my body. So, instead of curling up on the floor like I want to and just laying there like a wet noodle for the rest of the day, I'm drinking massive amounts of water with lemon, jogging back and forth to the bathroom, and doing my best to give myself permission to not worry about cleaning house or other tasks today. Instead, I'm focusing on me and my health. Sometimes you just have to do what you need to do and let everything else fall apart...and that's okay...really, it is! Tomorrow will be a better day and I will feel more clear headed and strong. The toxins will have been eliminated and I can start all over again. Hallelujah, no more trips to the rehab center (for now anyway) and maybe, just maybe my insurance company will approve the recirculating compression pump for my arms and I can do the treatments in the comfort of my own home. Keeping my fingers and toes crossed...til tomorrow, gotta run to the potty...see ya!

Step into my world

It's been a while since I've written an honest, open, and raw post about how things are going in my life so I decided today would be a good day to do just that. I know reading my posts on grand spiritual insights can get tedious and sometimes boring if the reader isn't quite in the mood for such heavy fodder, but don't worry, today will be light and airy.

It's the end of April and soon, I'll be celebrating 2 years of being in remission. (July 9th is my actual "cancerversary") It's hard to believe 2 years have passed by so quickly. Although I say they've passed quickly, some days felt like they'd never end. It's been pretty hard to look at my calendar and see an average of 1-3 doctors appointments scheduled every single month. Some months there are more but never less than 1. Sometimes I feel like a bug under glass...a science experiment gone terribly wrong. But I'm thankful for attentive doctors and though the appointments get tiresome, at least I know my medical team is keeping a close eye on me just in case something unique pops up. Everything I've read about breast cancer lets me know this process will continue until after I've reached the 5 year mark and then, although things might slow down a bit, I'll be under close scrutiny for the rest of my life. It's just a fact I have to learn to live with and that's a small price to pay for being alive.

Summer is sneaking in stealthily and with the Georgia heat intensifying, I'm finding it more difficult to stay cool. At home, I usually stay indoors enjoying the air conditioning but when I go out, with my prostheses and my compression sleeves on, I'm hot! I'm so hot I feel like I just want to strip naked and throw modesty out the window. I'm dreading going back for Lymphedema treatments. Next week, I'll start back with regular visits to the therapist. I'm hoping she won't do the wrapping like she did last time. Wrapping is worse than just wearing the compression sleeves. At least with the sleeves, I can pull them down or take them off whenever I need some relief but when I'm wrapped, I have to leave the wrapping on for a long time and it's so uncomfortable. Let me walk you through the process so you can understand a little better. I'll drive to the hospital and go into the physical therapy clinic. I'll meet with the CLT (the Certified Lymphedema Therapist) and she'll take me back to a dimly lit room. She'll ask me to lie down on a table and she'll put on some soft music...yes, sounds a little freaky, doesn't it? She'll begin to slowly massage each arm and my upper body. It takes about an hour to complete the therapy session and when she's done, she'll have me sit up on the side of the table. She'll raise the lights a bit and take some rolled cotton out of a box. She'll start wrapping my arms, one at a time, like a mummy. After she's got each arm wrapped securely with the cotton, she'll go back and apply an ACE bandage over the top of each arm and fasten it with a little metal fastener near my wrists. After I'm "mummified," I'll get dressed and leave the office. It will be difficult to drive home like this but I'll manage somehow. I'll pray all the way home that I don't get stopped for a traffic violation because I don't want anyone to see me this way and I surely wouldn't know how to explain it fast enough for them to understand. The therapy sessions usually start out with 5 sessions a week and then taper down to 3. I have no idea how many weeks I'll be going this time but I do know I have to go until my insurance approves the recirculating compression pump system my oncologist ordered for me. When they approve that, I'll be able to have treatment at home and there will be no more wrapping!

I continue to take all of my natural supplements to stay alive. This morning, I was looking at the bottles of everything I take and I wondered how my poor liver has been able to keep up. I'm thankful I did a liver detox last week and I think it helped tremendously. I've made a mental note to continue doing that on a monthly basis. Would you like to know what I take daily? Here goes:
Matcha green tea
Chlorophyll
Ashwagandha
Turmeric
Vitamin D2
Vitamin C
Potassium
Magnesium
Biotin
Coconut Oil
Fish Oil
Flax seed
In addition to all the natural supplements I'm taking, I'm also trying to eat tons of organic fruits and veggies. I try, but don't always, manage to get in an hour a day of walking. Some days I just don't feel like it so I don't. With all the housework I do around here, I'm sure I get enough physical activity to counter balance scheduled walking.

It seems my house has become a gathering place for extended family lately and it's been nice to have lots of company. Many of my days are spent alone for the majority of the day.  It's been nice to enjoy some pleasant conversation and visiting with loved ones.

Hubby and I are still trying to figure out when or if we'll be able to take a vacation this year. It depends on how I'm doing physically and whether or not we have enough money to get away. Medical bills continue to pile up and seem to be never ending. It's frustrating! We try to plan little mini trips around town so we don't always feel like we're depriving ourselves of doing anything fun. A week long vacation to the beach would be better than any medication the doctor could order. The ocean always refreshes and revives me. It's been calling my name for weeks now....

I continue to write for the breast cancer magazine. I enjoy sharing my experiences with others and it's really nice to be paid for my work! I also continue to review books for several Christian publishing companies. In exchange for my reviews, I receive free books. It's a win win situation for both of us. And then there's always my blog...my creative outlet...my place to vent and share my deepest thoughts. It's helped me process my thoughts and manage to stay sane. And that's the most recent update from my world. Things are going well and I'm thankful for that. Hopefully things will continue to run smoothly for the rest of the Summer. I like having no drama in my life. It's been great to be able to function without stress. Shouldn't everyone enjoy a life without stress? I think stress is one of the main causes of health problems in America today and it more than likely contributes to all the cases of cancer we're seeing on a daily basis.

I hope you have a wonderful weekend and most of all, I wish you peace and God's best blessings. Rest. Relax. Take time for yourself. Let love be your guide. Life is short. Don't waste a single minute.

© bonnie annis all rights reserved

Medically unnecessary

Medically unnecessary. Those were the words printed in large letters across a document of denial I'd recently received from my insurance company. My oncologist had ordered a new type of recirculating compression pump to alleviate the extreme swelling in my upper extremities. This condition, called Lymphedema, had occurred shortly after I'd been through surgery to remove both of my breasts and several lymph nodes in each arm. As I read the letter, I became very upset. As I re-read the letter, I became angry. How dare these insurance company agents determine what is and what is not necessary for my health? Shouldn't my oncologist be more educated in matters pertaining to breast cancer and the side effects? I certainly thought so. Toward the end of the letter, after the insurance company had supplied their standard explanation for the denial, were instructions on how to submit an appeal. Finally, a ray of hope! I was definitely going to do that, but first, I had to contact my oncologist and prepare for battle.

The insurance letter stated I had "not exhausted all means to reduce the swelling." They said I "had not tried other methods available" and I had not "tried exercise, massage, raising the affected part, or elastic bandages and garments." They said they "didn't see where other treatments were tried and didn't work for you." Boy, did I have some information coming their way as I prepared to submit my appeal. I read on and the letter of denial said, "This decision doesn't mean that you can't or shouldn't receive this service. Only you and your health care providers can decide whether you need it. But, this decision means that if you do receive the service, it won't be covered by your plan." We'll see about that, I thought to myself. The insurance company had no idea what I'd been through over the past year and a half and how I'd tried so many things to treat this uncomfortable condition.

I made a call to my oncologist's office and left a message for my doctor. I told him about the denial letter and asked if he'd be willing to submit more documentation to substantiate the medical need for the equipment he'd ordered for me. His assistant assured me she'd get the message to him and there would be no problem in him providing whatever the insurance company needed to appeal the claim. I was thankful to have that assurance tucked safely in my arsenal.

After speaking with my oncologist and giving him a "heads up" about the denial from the insurance company, I contacted the company that manufactures the recirculating compression pump. I talked with a representative there and told her about the denial letter I'd received and asked what I needed to do to provide them with more information as they had agreed to also submit a request for review and reconsideration. The representative suggested I take photographs of the swelling and submit those along with a handwritten, personal testimony of how Lymphedema has impacted my life. Her suggestions seemed like very valid ways to present my case. I thanked her and agreed to copy her on my letter. I had no idea how to write an appeal letter to an insurance company. I didn't know what they needed to change their minds about whether the equipment was medically necessary, but I was going to give it my best shot.

As I waited for my computer to boot up, I gathered my medical notebook where I'd kept a record of each and every lab result, test, surgery or medication since I was diagnosed with breast cancer. The notebook had started out completely empty and now was almost 3 inches thick with medical records. I flipped through the notebook marking pertinent information with sticky notes so I could refer back to them easily as I prepared my letter. I opened a blank document in my word processor and began to write my letter. I was surprised at how easily the words came to me. I decided not to fill the letter with medical jargon, although I knew that was something the insurance company would easily understand, instead I decided to write the letter so they'd feel my heart...that they'd understand I was a real person with valid health issues. I wanted them to know what it felt like to wake up first thing every morning with arms so swollen and painful that it was difficult to get out of bed. I wrote about not only the physical limitations Lymphedema imposed on my life, but also about the pain and humiliation that went along with it. I explained the swelling has increased the girth of my upper arms so much that I have great difficulty finding shirts and blouses that I can even get my arms into the sleeves. I wanted them to understand the swelling gets worse as the day goes on and often, by midday, I have to sit with my arms elevated for a hour or so, because they are so swollen and sore, before I can continue my normal household duties. I followed the representative's advice and listed every single treatment I'd tried to combat the Lymphedema. I put dates and locations. I even took my cell phone and snapped photos of my bare chest and upper arms so the insurance agents could see what I was trying to explain. My letter, by the time I'd completed it, was three pages long. I felt like I'd done my best to provide adequate information for reconsideration of my claim.

It's so frustrating to have to defend myself to the insurance company. We pay our insurance premiums on time every single month and have for over 35 years. Why is it, that when they decide they don't want to pay out a large sum of money for a fairly new medical treatment, the claim is instantly denied? I wonder if most cancer patients who receive a denial take the time to fight back or if they just accept defeat and end up paying for whatever they need out of pocket. It seems a very unfair injustice is done to those of us who have already been through the trenches of war in a battle we never chose for ourselves and then, to have to fight for what insurance companies deem medically unnecessary. It just doesn't make sense.

Yes, I understand the insurance companies want to find ways to hold on to their money and avoid paying unnecessary or unsubstantiated claims, but good grief, don't they think an oncologist is the best one to decide their patient needs? All that medical schooling to specialize in the field of diagnosing and treating cancer must give them a whole lot more expertise than a few board members sitting around a table at an insurance review board, don't you think? I sure do and I would advise any patient to stand up and fight for their rights. The letter said, in big bold letters, "You have the right to file an appeal." And that's just what I did. Now I have to wait and see what happens next. I'm praying the documentation I provided will be enough and even if mine isn't quite what they need, perhaps my doctors' information will cause a reversal of the denial of the claim. Medically unnecessary...I wonder how those insurance agents would feel if they received that same type of denial letter when seeking treatment for one of their loved ones? I bet they'd seek an appeal, too.

© bonnie annis all rights reserved