In July 2011 Barbara Carlos was diagnosed with stage 3 breast cancer. A resident of Hawaii, she works in administrative support at a college and has retirement as her career goal. Music keeps her sane, as side effects of chemo and radiation linger. Overweight since childhood, she keeps trying to lose the estrogen-laden fat that her cancer loves.

Barbara Carlos

Durable medical equipment, or DME, covers a broad range of items. Included are things like wheelchairs, ventilators, canes and crutches, kidney machines. Essentially it is something that is needed and used by someone who is ill or disabled.

I never thought of my undergarments as being “durable,” or as medical equipment for that matter. However, as it turns out, also included in the long list of DME items are mastectomy bras and breast prostheses.

Hmm, a durable bra — it’s an interesting concept, but surely you can understand my brain's confusion with the term. Over the years, most of my bras have had some sort of lace involved. Durable is not a word I would use to characterize them. And although I may wear my bras until they are old and the elastic is stretched out, I still wouldn't use durable to describe them.

Last week I had an oncology visit. All is going well, at least as far as can be determined. Every year, I opt for the three mastectomy bras that are covered by Medicare. This year, I was also eligible for a new prosthesis. The paperwork authorizing the expenditures was processed, and on Saturday I went shopping for new durable medical equipment in the lingerie section of a department store.

Mastectomy bra shopping takes me more time than buying other clothes. As I continue to lose pounds and inches, measuring to get the right size and comfort level is important. And then there are so many styles to choose from. I tried on a dozen or so and narrowed down my selection. My weight loss also meant it was time for a different, smaller prosthesis. Prostheses also come in different sizes and styles, so I had to find the best fit for me at the weight and shape I am now as well as the weight and shape I think I will be a bit further down the road. Decisions made, the purchase was finalized. My DME bras went off to alternations to be pocketed to hold a prosthesis and my new prosthesis was put in an elegant shopping bag for the trip home.

It's been a few years since I started wearing durable medical equipment. My ears have gotten used to the term. Nevertheless, it still makes me smile a little when I think of what that term means when applied to my life.

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The first time I heard that term I didn't know what they were talking about. Even now my brain goes a little bit crazy when that term is applied to lingerie.

Durable Medical Equipment?

Somewhere in the haze of diagnosis, mastectomy and follow-up visits with the surgeon and oncologist, the subject of lymphedema was raised. It was a new concept for me, but a lot of things in Cancerland were new to me. A month after my surgery, I started chemo. I was also given an appointment with an occupational therapist regarding lymphedema.

My sister is an occupational therapist, so I asked her about it. It turns out that occupational therapy has many specialties. Neither lymphedema nor arms were in my sister's area of expertise, but she did explain a little bit about it.

When I met with the OT a few days later, lymphedema was explained in greater detail. I think in the previous month or so, I was still too overwhelmed to pay attention to anything I was told about it by doctors and nurses. The OT measured both my arms to have a baseline in case I developed any swelling. She also gave me exercises to do to, hopefully, alleviate any swelling in my arm or chest if it did develop. She didn't just give me a sheet of exercises, although I was sent home with the written directions and pictures. She also had me do them over and over as we spoke, making sure I learned them correctly. I left with instructions to practice them three times a day for a month. And I did. Lymph nodes had been removed during my surgery, and cancer was present in some of them. I am a good patient and wanted to do whatever I was told to get well and be well, so I mastered the exercises.

Time went on and there was never a sign of lymphedema. I forgot about it. I forgot about the exercises. Yes, I know lymphedema can develop at any time, even years after surgery. For some women it is a constant, complex, painful and difficult issue to deal with. For others, it flares up and goes away at its own pace. Some never experience it.

I was at an appointment at the oncology clinic and wasn't aware of anything being wrong. I didn't wear any rings, bracelets, watch or anything on the affected arm. In retrospect, I recalled that the skin had felt a little bit tight in the previous few days but I had so many other side effect issues that I barely noticed the tightness. It was just one of the many things I had to deal with. I live in Hawaii, so I usually wear short sleeves or sleeveless clothes.

When the nurse practitioner came in the room, she immediately noticed the swelling in my arm, said, "You have a little bit of lymphedema," and asked me about it. I stared at that arm and then at the other, clearly seeing the swelling now that it was pointed out to me. I was shocked. How could I be so unaware? Would it get worse? Would it ever get better or go away? What was to be done? How did this happen? What had I done wrong? I was frantic.

All nurses are angels in street clothes. Christa calmed my fears. Then we reviewed the symptoms and the exercises I had been given what seemed like ages before. For weeks, I did my lymphedema exercises each waking hour, sometimes multiple times an hour. After a week I thought I saw some progress, and over the next few days the progress was slow but steady on a daily basis. The swelling gradually subsided but my fear of a return was real.

A little bit of paranoia is good. Those of us who have done the cancer dance know that, and we recognize that our paranoia may be the thing that keeps us alive one day. I was fortunate in that someone who knew what to look for caught it before it got any worse. I was oblivious, and who knows how bad the lymphedema would have gotten before I noticed anything was wrong. Over time, my fears subsided, but I still find myself checking my arm throughout the day just to be sure there are no signs of swelling. It's one of the first things I do when I get up in the morning and one of the last things before I turn out the light. It's such an ingrained habit that I don't think I'll ever stop.

Last year I met a breast cancer patient who has some pretty snazzy compression sleeves, but you can still see the swelling in her arm and the discomfort it creates. I think she'd gladly turn in her sleeves and I wish I could do something to help. In these posts, other women have written of the challenges and difficulties they have with lymphedema, often on an ongoing basis. Maybe you know someone with lymphedema, or maybe it's been part of your experience. I realize my "little bit of lymphedema" was nothing compared to theirs, but it was more than enough to scare me and it gave me a deeper understanding of what others are going through when lymphedema is a constant companion.

Although I was aware of lymphedema, it wasn't really something on my radar screen, until I heard those words.

A Little Bit of Lymphedema

A couple of years ago I had an abscessed tooth. I didn't know there was anything going on there because one of the advantages of neuropathy is that you don't feel pain. However, when routine dental X-rays were taken, the huge abscess smiled for the camera. I didn't feel a thing. I went off to the endodontist for a root canal. No problems there. I had no problems for two years.

Some of my nerves have been healing and I now have feeling or partial feeling in different parts of my body. It's not like before chemo, but it's nice to be able to pick up a paper clip by touch instead of having to watch my hand do the task. Over my lifetime, I have invested quite a bit in my mouth, so I am good about a dental checkup every six months. A few months ago, occasionally I would feel a twinge of something in my mouth, but it was so fleeting that I couldn't zero in on it. It seemed like a tooth was trying to send me a message. I don't speak tooth, so I couldn't figure it out. I went to the dentist to have the message interpreted. Guess what? I had another abscess in the same place! Again, I couldn't really tell because I couldn't really feel it.

Back to the endodontist for a diagnosis of a failed root canal. Clicking on my friend Google, I found that this does happen, albeit a small percentage of the time. Lucky me! Interestingly my endodontist also noticed necrosis of the bone in my upper jaw. Google searches showed me that meant part of my jawbone not only had died, but it wasn't even there anymore. Looking at the X-rays, there was a big space where bone used to be and should be but wasn't. The endodontist had seen it happen to others who had radiation. I even found a mention of jawbone necrosis after radiation on my friend Google. Normal treatment would be to remove the tooth. The tooth is in the front of my mouth. I didn't like that idea. Since my aromatase inhibitor has the delightful side effect of bone loss, this created an issue for me. My endodontist is a very nice guy and he spent two and a half hours carefully retreating the tooth to save it for me. All was good in my world.

Two months later I noticed a funny taste in my mouth. Investigation revealed unpleasant liquid oozing from the gum where the problem tooth was located. Back to the endodontist. This was definitely a problem and he sent me to an oral surgeon with a recommendation that the tooth be removed. During our conversation, he mentioned the possibility of removing just the root. I googled again and liked that option.

Off to the oral surgeon. He wanted to remove the tooth right away. I brought up the subject of removing the root only. He was hesitant, but I think he quickly figured out he had a patient who wasn't going to agree to that without a thorough explanation of reasons to do so. He did another exam, X-rays and a CT scan. He told me he would remove the root only since the gum and the rest of the tooth were OK, but he wanted me to understand that in another 20 years I would probably need the tooth taken out. I burst out laughing! I told him "In 20 years I'll probably be dead and I won't care!" An appointment was made for this major project.

I have dental insurance which covers part of my dental visits. When I returned to have the root removed, one of the dental technicians told me that the oral surgeon wanted to do a biopsy which wouldn't be covered by my dental insurance. Biopsy is a word that should be used cautiously around those of us who have had cancer. I could never play poker because what I think and what I feel register immediately on my face. Inside I was screaming "Biopsy? Whaddaya mean I need a biopsy?" but my mouth didn't move. The technician took one look at my face and quickly ushered me into an exam room. She gave me a few minutes to compose myself and then the doctor came in to explain that he thought, given my medical history, that a biopsy of the area would be a good idea. By the time he finished I had calmed down. I gave the receptionist my medical insurance info for the needed biopsy pre- approval. It was approved a week later, and I returned for the apicoectomy (that's a fancy word for removal of the root of the tooth) and the removal of the problem area for biopsy. This meant I had a big space in my jaw where the root of the tooth, the dead part of the jawbone and the part of the tissue and bone that was taken out for biopsy all used to hang out. Like me, you are probably wondering what would happen to that empty space? Not to worry. There was a solution to the problem. The oral surgeon filled the space with liquid cadaver bone. That was the first I had ever heard of liquid cadaver bone. I didn't ask any questions. I guess I didn't want to know too much about what cadaver it came from.

I have had six months to get used to the idea of liquid cadaver bone injected into my jaw and I have some questions to ask when I return to the oral surgeon next week. It takes that long for the bone to solidify and attach itself to the existing jawbone. I hope it has done so and the healing is complete. Either way, you can be sure I'll be sharing the results of that visit in a future post. As for the biopsy results, I saw my primary care physician a week after. The results were "Benign blah blah blah intact sac blah blah blah blah." Since the first word was the only one that mattered I really couldn't hear the others.

A cancer survivor's visit to the dentist turns into a medical issue.

Biopsy? Whaddaya Mean I Need a Biopsy?

When recently speaking with a newly diagnosed breast cancer patient, in the course of our conversation she innocently asked me when I had had my mastectomy. I knew from the tone of the conversation that the answer she was looking for was something along the lines of how long ago. After all, we were talking about diagnosis, treatments and side effects. I could tell she wanted a yardstick to measure where I was and where she was in the journey. Yes, I knew she had a time frame in mind. Instead, I purposely gave her the exact date. She was surprised and showed it. She even asked me how I could remember exactly when it was done. I explained, as best as I could, that it was a day like no other, a turning point, or at least the start of a large turn in my life. It was a day I could never go back and undo, a day that brought so much change into my world and continues to do just that, even now.

I don't know if my explanation was clear. I hope it was. I know she is facing a lumpectomy in another week. I didn't mean to scare her, but cancer is scary, especially in the beginning. She brought up the scariness factor several times in the course of our conversation, and I agreed with her.

When I was first diagnosed I was scared. But in a matter of days, the fear was replaced with fierce determination. Information is power. I absorbed cancer information slowly and in small bites. I could only focus on a small piece of information at a time, but each day, throughout the day, I took in a little bit more. Eventually I had enough information to feel empowered. There were still a lot of unknowns in my cancer world, like size and staging, how my body would react to the surgery and how I would feel afterwards, who my oncologist would be, what chemo would be like, and a whole lot of other things I had no clue about. My determination came from that empowerment. I was willingly walking into the closest thing to hell that I expected to encounter, and I was determined to walk out on the other side. I knew I wasn't going to make it through unscathed, but I was determined to make it.

So, yes, I remember the exact date of my mastectomy. It was Aug. 2, 2011, a Tuesday. So many things changed as a result of that day. I changed too - physically, mentally and emotionally - and I am still me, maybe just more so.

To most of the world, the day I had a mastectomy was just another day. But to me, it was the start of so many changes in my life.

Barbara Carlos

Durable Medical Equipment?

A Little Bit of Lymphedema

Biopsy? Whaddaya Mean I Need a Biopsy?

Of Course I Remember the Date of My Mastectomy

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