Credit Where Due

I have not given full credit where it is due.

Leslie has been there every step of the way.

He’s bought food, and marked appointments on calendars, and listened to me whinge.

I can’t imagine doing this alone. People do, somehow, but it’s a lot. If you need a driver to take you to and from your surgery, who does that for you? If you need for someone to pick up your meds because you had to chose a reliable pharmacy which wasn’t close to home, who does that for you? If you need someone to act as your extra set of eyes and ears, who does that for you?

I’m counting my lucky stars.

The Prep Work

This is the lull phase. It’s the waiting between the diagnosis and the procedure.

People have been sliding gifts and well-wishes to me. LilSis sent an Amazon gift card and I bought specialty bras with a zip front. A coworker brought me a computer bag. She said that way you can take your laptop to all your appointments and make notes.

A childhood friend sent a prayer shawl. How did she know it matched my glasses?

Another online friend who is a jewelry maker sent earrings. I had requested some kind of little pink symbolic things, or really whatever she wanted to send. She sent a box with at least 5 sets. One set matches my work shirt.

Another friend from high school who had exactly the same DCIS years ago called to offer support.

Because I am mentally planning for radiation, I bought a product recommended by someone in the support group that is to be applied after a radiation session. It’s a healing ointment- who knew it was mostly petroleum jelly?

I’m still three days out from surgery at this point when the oncology radiologist called to say that he had received the results from the DCISionRT test. I didn’t know he had requested the test because the surgeon said they wouldn’t do any testing until after the lumpectomy. However, the surgeon had never heard of the DCISionRT test, only the OncotypeDX.

He said he was surprised at how low my score was. This test predicts the potential reoccurrence of DCIS in the next ten years with and without radiation. Without radiation, I’m at 9%. With radiation, I’m at 7%. This is big! This means I have no appreciable benefit of having radiation therapy.

I told him about my first cousin who was diagnosed last year with DCIS. She’s in her late 70s, she had a lumpectomy with a second lumpectomy to get clean margins, and her OncotypeDX results showed 5% without and 3% with radiation, so she opted out. She’s on a hormone suppressing drug, and I probably will be, too. Her mother and my mother were sisters, and she also had genetic testing with shows she doesn’t have BRCA genes, which was a relief to her because she has female descendants.

I’m happy with this news. It seems like a bright spot.

*****

Two days before the procedure, the scheduler calls to tell me that I need to be at the hospital at 8:25am. No food or water after midnight the night before. No lotions, creams, sprays, or roll-ons to be used. The covid19 test was negative like I knew it would be. I will go home the same day. I will not be able to drive home or to make big decisions because of the after effects of the anesthesia. I will most probably be in surgery by one to one-and-a-half hours after arrival. I will receive a phone call the day before surgery with a finalized arrival time.

I’m sitting in the car of the Publix parking lot, eating a salmon salad, trying to eat clean with greens and protein. I’ve stocked up with protein drinks and the BabyGirl sent specialty vitamins.

What have I neglected? Oh, I put everything on autopay so I won’t miss paying something important.

Now? More waiting.

The SaviScout

3/30/21: back to the hospital to the mammogram room for an implant clip called a SaviScout.

The nurse in Dr. Surgeon’s office explained that the SaviScout was used in place of a wire to mark the location of the DCIS. I was confounded by the word “wire”. Did you know that actual wires are inserted in a woman’s breast to mark the location that needs to be removed? I’m upset that women have to go through these things. It seems like butchery. We can talk more about that later.

The SaviScout is a locator clip that, when activated, gives off a signal that tells the surgeon where to excise. Of course, there is the equipment that activates the signal before the surgery and continues to read the location.

I’m back to the original mammogram room with the same nice technicians that I had before. The radiologist that is going to do the implanting is someone new to me. I was clamped in the machine much like before, but this time the clampage was such that the entry point was on my left lateral.

I had been told that this implant was going to be less traumatic than the stereotactic needle biopsy. I know I have to move forward in the process, but I don’t want to. Here I am anyway, clamped in the machine. The problem with this clamping is that my left arm has no where to rest. I’m reaching across open space to grasp the handhold, and I can’t easily maintain this position. My left hand is going numb. My arm is quivering, and I’m trying to hold it up with my right hand, which is also getting tired from the extra work.

The radiologist comes in the room behind me to my right. I never saw him, but his disembodied voice floated in the room. The technician asked him if he wanted a scalpel. He hummed and hawed and said “scalpel?” She said “yes, do you want a scalpel?” I wanted to tell them to stop saying *scalpel* because I can hear them. He decided that yes, he did want a scalpel, and I know that someone is going to get cut.

He moved into position to my left, still out of view, and told me that he was going to inject the area with a numbing injection. He asked me if I could feel pain, and I told him that no, I could only feel pressure. After inserting the device that would inject the clip, they had to take an x-ray to see if it was inserted in the correct position. They determined that everything was as it should be. In the meantime, I was moaning and quivering and my left arm was dead weight.

Finally, I am set free. It was not as painful and traumatic as the needle biopsy, but I don’t wish this on anyone.

The following Sunday was Easter. Dr. Surgeon is taking the week off, so that’s going to bump my lumpectomy to the week after. The nurse navigator is taking off the week of my lumpectomy. That’s usually the spring break week for this county because there’s a big golf tournament that usually takes place.

I’m scheduled for a COVID-19 test even though I’m fully vaccinated. This will take place 3 days before the lumpectomy, which is scheduled on Friday, April 16, 2021.

So the COVID-19 test. That was less than fun. I had an appointment at 10:30AM at a drive-through location across the street from the hospital. There’s a big medical RV parked in a back parking lot. A nice technician came out of the RV and approached my car from the passenger side. She asked for my name, and because she didn’t seem to understand what I was telling her, I pulled one of my medical bracelets off the gear shift and handed it to her. She then understood that I was who was supposed to be there, and I presented my ID.

I had to roll down my driver’s window, and she came around and explained that I would have to lower my mask in order for her to insert the swab that was as long as a knitting needle. She said that she had to leave it in position all the way back in my nasal passage in order for it to make contact for 5 to 6 seconds, and that some people had described the sensation like that of getting water up your nose, and that you might have a soft cough.

She inserted the swab gently but firmly, and I felt it go all the way to the back of my head. It was definitely a sensation of water in my nose, and then the cough came even though I tried to suppress it.

She withdrew the swab, and placed it in the medical tube, and said that I would be notified if the test was positive.

We’re on the countdown now. Three more days.

Back to the Surgeon

Now it’s a preop with Dr. Surgeon.

As a side note, I had asked my supervisor if she could schedule me off on Wednesdays in general because that seems to be a good day to see the various doctors. She said that she would have to give me Mondays because that works better for the schedule. I’d like to add that she hasn’t actually been to my office in several years, and I know what works better for that office than she does. Her unwillingness to give me the day I need really frosts my cookies, because it means that I take a day and a half off per week, and I need to make sure that I maintain at least 30 hours per week in order to be considered full time and maintain my health insurance. She has also told me in the past, when I’ve told her that she has scheduled me to clock-out before the office closes, that I knew what worked for the office and that she knows I’ll be working after closing. Her logic or lack of it astounds me. I’m working a check-out desk and training a new worker so that’s a whole lot of fun.

Anyway, it’s Wednesday and I’ve taken off early from work to go see Dr. Surgeon. See above.

He has to do an exam, and I have to change my top and put on that attractive paper top with the opening to the front. During the exam, he tells me that I will have to have a clip inserted. My head jerked up and I looked at his face and saw his staring out the window during his palpations, and I said “I’ve already got a clip”, and he said, “this is a different kind of clip.”

He proceeds to tell me that I have DCIS and it has to come out. Seems like an understatement.

He also said he would walk me through the procedure. It will be an outpatient surgery, but will be done at the hospital, not the outpatient center. I’ll be sedated, he’ll remove the DCIS, it will go to pathology, they’ll make sure we have clean margins, and then he will close. He said he wouldn’t close until he gets clean margins.

I mentioned to him that I had recently remembered that my first cousin’s Christmas card mentioned that she had had breast cancer TWICE but now she is cancer free. When I called her, she told me that she had DCIS, also on the left side, and that two lumpectomies were necessary to get clean margins. This made me doubt her doctors because mine has just told me that he wouldn’t close with clean margins of 2 millimeters, but more on that later. I told him that there is no history of breast cancer in my family.

Dr. Surgeon told me that 50-60 thousand women are diagnosed each year without a family history. Strangely, this doesn’t make me feel better. I would suppose that the testing has gotten so much more precise that things are being caught that wouldn’t have been previously.

Dr. Surgeon finished his spiel, and as he left the room, he slowed down with his hand on the doorknob, and looking back over his shoulder at me, he said, “We’ll hope and pray we get it all.”

I’m hearing conflicting messages.

Meeting the Oncology Radiologist

After this appointment, I have to go on to work, so Leslie wasn’t able to go with me unless we took two cars. This seems like an unnecessary complication, so I headed out alone.

I went back to the same cancer center that I was at the day prior when I met the oncologist. I haven’t been sure how to refer to the oncology radiologist. Is he a radiologist specializing in oncology? Is he an oncologist specializing in radiology? So many questions in general for this whole process.

I arrived in plenty of time and checked in with a nice lady named Angie who gave me a heap of paperwork to process. She said that my nurse would be a nice lady named Rose.

When my time came, Rose took me to the back and checked my weight and my blood pressure and my oxygen. She led me into a small consultation room with a desk and a desk chair, and a couple of chairs across from the desk. I waited a fair bit for someone to come along. I wasn’t sure what to do, so I sat there and twitched a little.

Suddenly Dr. Radiologist and Erin the Navigator entered the room. He introduced himself immediately and stationed himself behind the desk with Erin to the side. He launched into a steady stream of information, and his gaze was so direct that I couldn’t look away to make notes.

Here are some things that I gathered:

There are two types of testing that can be done to ascertain if I will benefit from radiation treatment. One is Oncotype DX and a newer one called DCISionRT (pronounced decision RT). These can help predict in percentages if this cancer will recur in 10 years, with and without radiation. So if I have a score of 20% recurrence without radiation, and 10% recurrence with radiation, it’s pretty clear that I would have radiation. The problem is that my DCIS is on the left side so it’s near the heart and left lung, and radiation could affect my heart and lung. There’s a breathing technique used during treatment where you take a deep breath and hold it for 10 seconds to help lift the DCIS away from the heart and lung.

I am not one bit interested in having radiation, but then I am also not interested in having DCIS recur. Those sneaky little cancer cells can be hiding and are undetectable by modern testing until they reach a certain age. Mine has been growing for probably 8-10 years, but it is when they are about 6 years old and have attracted calcium which attaches to them that they become shown on the mammogram as calcifications. However, calcifications can be shown on the mammogram, but it’s not DCIS, it’s just calcifications. So radiation is necessary to zap all those little hidden cancer cells.

I asked when I would be scheduled to meet again with the surgeon, and was told that the surgeon’s nurse was out sick that week and that someone would call me next week.

I’m definitely interested in having testing to find out my chances for recurrence.

I finished up with Dr. Radiologist and headed on to work.

Now I wait to hear from the surgeon.

Meeting the Oncologist

Leslie and I had an ongoing discussion.

He wanted to go with me to the oncologist. The appointment was scheduled for a mid-afternoon, about the time he usually feeds the dogs.

I said no, I could go without him. The few disruptions in the daily schedule, the better.

No you can’t, yes I can, no you can’t, yes I can.

I gave up, and he went.

****

We’re back at the new cancer center in Okatie. I was told that the oncologist’s office was on the first floor on the left by the elevator. We went in, stopped at the COVID-19 screening station immediately inside the door on the left, and went on past the elevator. That was wrong; it was a different office. Then I puzzled out that the COVID-19 screening station was set up in front of the office, almost completely obscuring the office entrance for first-timers. We made our way inside the office, where I presented my ID and insurance card and filled out more of the same paperwork.

A nice technician named Cherish walked us back to an exam room where she took another history, checked my blood pressure, and checked my oxygen levels. She left, and Dr. Oncologist and Breast Care Navigator Erin came in.

Dr. Oncologist went over what I could expect. The DCIS is estrogen and progesterone positive, meaning that their growth is fed by hormones. After the lumpectomy, there would be radiation and 5-10 years of a hormone suppressing medication, most probably Tamoxifen. Erin gave me a copy of the pathology from the stereotactic needle biopsy.

You might have caught that Dr. Oncologist never used the word “mastectomy”. I didn’t. Leslie did, and he asked the doctor is he was saying that the surgery would be a lumpectomy, not a mastectomy.

The doctor agreed that was correct. This was eye-opening, and mind-blowing, and all the other phrases for unbelievable.

Erin gave me a tote bag with an enormous handbook about breast cancer, the different types, the possible surgeries, and what to expect, along with first-hand accounts from breast cancer survivors. There was also a folder with resources and other information, regarding diet, exercise, and counseling.

I don’t remember much else about this appointment. I’m overwhelmingly relieved that a lumpectomy could be the answer.

Billing Errors and Support Groups

It’s a couple of weeks past the first mammogram, and the bills are starting to roll in.

The bill for the mammogram was $503.

This is with insurance.

When I was checking in at the imaging center, one of the questions was if I wanted a 3D mammogram. If so, it might or might not be anywhere from $75-$125 extra.

I don’t know what possessed me to check “yes”. I suppose it seemed like a good idea since I hadn’t had a mammogram since 2012. I wasn’t delaying the mammogram on purpose; I went back in 2013, but without insurance the pelvic was estimated at $800 plus then the mammogram.

So now I have insurance for the last several years. I couldn’t decide who I wanted to go to. I take a long time to make a decision. Work conditions and work load were such that any time away just made it worse when you returned. Processes were not in place to encourage women, the bulk of the work force, to take care of their health. It was like I had health insurance for emergencies. Have an appendectomy? You’re covered. Get hit by a car? No problem. Now if you are out with an emergency, someone will have to cover your work or it won’t get done. Wouldn’t it be a practical approach to assist your work force by planning in such a way as to provide time for maintenance care, not just emergencies? Either way, the workplace needs a backup plan.

I noticed a disclaimer printed on the bill that said my claim was rejected by my Blue Choice Medicaid.

Y’all? I don’t have Blue Choice Medicaid.

I work in an optical office. The doctor I work for gives eye exams. This is my first experience working in a medical office which accepts insurance. Our office accepts most insurances of major medical, plus Medicare, and Medicaid. The monkey wrench that gets thrown into the works is a thing called Vision Plans.

Ah, Vision Plans. Learning about that was an eye-opener to me because I’d never had a vision plan. Do you have a vision plan? Do you know who it is with? Most people don’t. They just know they have a vision plan. The most popular plans we see in this area are Eyemed, Spectera, and Vision Service Plan, but there are many, MANY more.

When many people make their appointments as a new patient, they don’t want to chat on the phone even though I need to gather critical information to complete their patient file. It’s not enough for them to give their name and contact information and to say that they will bring their insurance when they come to their appointment. I have to break it down for them: you tell me that you have a vision plan and I need to confirm that you are eligible. So simple, but people can’t be bothered, plus they think that we on the other side of the check-in desk have a magic button that we push to get the information about their vision plan. News flash – we don’t. It is your responsibility as the policy holder to know that information. In the time of COVID, I don’t want people hanging around the lobby filling out paperwork and answering questions. I want everything pre-addressed and all possible problems located before they even enter the building. This can be accomplished by telephone, email, and texting. Help me do my job efficiently. If I don’t gather this information until you come into the office and you are not eligible, suddenly you are mad at me for not trouble-shooting the situation. Your time is wasted. My time is not wasted because I now have the information that I needed and I can take care of you better. Some people are old school and want to do all their dealings in person, but times have changed.

Some of the vision plans have been sold to other companies causing further complications in locating them. You used to have Davis with was sold so now you have to go to the new parent company to access that information. Or let’s say they used to have Guardian or Superior but it might now be with Versant, but don’t forget to check VSP. It’s so ridiculously complicated that I made my own spreadsheet with user names, passwords, and links to websites.

Then there’s Medicaid. When you have Medicaid, it could be any number of plans, and we don’t accept all of them, so we need to know what form you have. If we don’t accept it, you are going to get a bill. You don’t want to get a bill.

So even though I have presented my information on the phone and in person at the imaging office, they still got it wrong. I’m not mad because I get it. Blue Cross Blue Shield is a popular insurance, but a lot of other plans piggy-back their names so they sound similar, like “Blue something or other”, plus some of the Medicaid plans have the word “Blue” in them. So if you are working the accounts and you enter the word “Blue”, you will get a long list of choices. You could possibly think that you are clicking on one and accidentally click on another.

It’s complicated and stressful for everyone.

So I called the number on the bill and talked to a nice lady name Krista to tell her that I have gotten a rejected bill and don’t have Blue Choice Medicaid. She noted right away that they needed to correct the insurance, which she did, and said that they would rebill.

However, this doesn’t feel good that the first bill was handled incorrectly, because I’m sure there will be many more of those to hit my mailbox.

*****

I joined a FB support group for women with DCIS. So many of those people are having single and double mastectomies, radiation, and hormone-suppressing medications. It was a sudden reality check with a steep learning curve.

I started practicing sleeping on my back because if you have a mastectomy, you can’t sleep on your sides. I bought special post-surgical bras for compression to help eliminate fluid build-up. I learned that DCIS is considered stage zero because it is self-contained in the ducts, but if it escapes the ducts, it is considered invasive. Some health professionals consider it pre-cancer, but the word “Carcinoma” is still in the description, and that is a sore point for the people that actually have DCIS. I learned that some of the women are having reconstruction after mastectomy, and if they don’t have enough skin left after mastectomy that skin from other parts of their bodies are harvested to use for reconstruction, and they might be getting implants or expanders.

I don’t even know what else I don’t know, but let’s roll forward.

More Testing

Now it’s time for an MRI, with and without contrast. I’ve been told by Elaine at the surgeon’s office that I also need an EKG and a chest X-ray. She said I could stop at the new center or the Beaufort location at any time for the EKG and the chest X-ray, but it makes sense to me to have it done at the same location on the same day as the MRI.

I arrive at the hospital early and sit in the parking lot for a bit. All this medical stuff is new to me.

I locate the correct door to enter. Here in the time of COVID, not all entrances are available. I make my way to the screening station where the attendant takes my temperature and asks the standard screening questions: have you been exposed to COVID-19 in the last 14 days, have you traveled in the last 14 days, and have you tested positive in the last 14 days. She is satisfied with my answers and sends me on to the check-in lobby which is down the hall past the gift shop on the right. Here’s where I start not trusting myself.

The gift shop is in my view from the screening station. As I make my way, the hallway turns to the right past the gift shop. After that on the right there are two large doors that says MRI authorized personnel only. I’m there for an MRI, aren’t I? What does this mean? How did I miss the check-in lobby? I stood outside those doors and breathed for a minute.

Further down the hall, I saw a sign that led me to believe that was my check-in station so I walked a bit further and found that this was an intersection of hallways and the right corner nearest me was where I needed to be. There was no one at the check-in station, but I signed in and took a clipboard to fill out the paperwork. It was the same paperwork that I had filled out when I had the mammogram, when I saw the surgeon, and when I had the stereotactic needle biopsy.

A lady called my name and said for me to go to station 2. It’s a kiosk of sorts where she sat on the opposite side, and I gave her my ID and my insurance card and paperwork. I told her that I also needed an EKG and a chest X-ray, and she asked me if I had orders for that. I didn’t, and told her so and told her that I had been told I could get those at any time and if I needed to go to the other center, I could do that. She said that wouldn’t be necessary, they could do everything today.

I went back to the waiting room, and did a bit of knitting. An attendant entered the room and called my name, and I recognized him from the doctor’s office where I worked. He led me back to the double doors for MRI authorized personnel only and led me to a dressing area. I filled out more paperwork, part of which wanted to know what meds I was taking and asking if I had had hormone replacement therapy or had been on tamoxifen. We discussed what would be happening and he asked if I had any metal implants or dentures. I indicated that I had earrings that I was unable to remove. I had these silver hoops that I had been wearing for years because I couldn’t get them out. I had ordered them on Etsy, and they were hand-made by a woman in Canada and they featured a special device to keep them from coming out which worked so well they were part of my persona now. He couldn’t get the device out and wasn’t sure how they were supposed to work, but he thought his associate could figure it out. I told him if we had to cut them to get them out, we could. He gave me a set of medical clothing to wear because my pants had a metal zipper and couldn’t be worn in an MRI machine. I also received a key to a locker where I could store my things. I got changed in the dressing room and noticed that someone else had lost the back to pierced earring. It sat on the floor and winked at me.

I waited outside the dressing room next to the locker with all my little worldly goods, wearing my new medical outfit. The top was a design I hadn’t seen before. Your left arm goes in an armhole, the garment goes around your back like a jacket, then your right arm goes in another armhole, then a whole front with yet another left armhole goes across your front. The intention is that you are supposed to lie down on your stomach in the MRI machine on a special tray made for your chest to be exposed, but the garment gives you privacy across your back.

His associate came along and I recognized him as another patient in the office where I work. He figured out the device and got both of my earrings out. Then he started putting in an IV in my right arm, which I wasn’t expecting but then I don’t know what an MRI with and without contrast involves. He inserted the IV needle high up on my forearm, almost to the crook of my arm, and asked me if I was on blood thinners, which I am not. I was disconcerted by the placement of the needle, and sat with my arm extended stiffly because I was afraid that the needle in my vein wouldn’t bend and would poke through my vein if I bent my arm at the elbow. The technician apparently saw me sitting there awkwardly and told me that it was okay because it was a tiny little plastic needle.

The IV was accomplished, and I was led into the MRI room. I handed over my glasses, and the first technician said I could remove my mask. I said that if they had to wear one, I would wear one. I wear one all day long and I’m completely comfortable with it. He gave me a set of earplugs, then held up a sheet to give me a bit of privacy because I was going to have to arrange myself on my stomach and get the girls in position. Once I got in place on my stomach, they told me to extend my arms over my head, which I accomplished in a belly-flop position, and they twisted my hair into a loose ponytail and piled it to the left side of my head, being careful and attentive. Then they put a foam wedge under my feet to elevate them and take some of the pressure off and hooked up the IV and gave me a call button to press if I needed assistance.

I have never been in a submarine or on the Starship Enterprise, but I have watched television, and the ambient background noise on TV shows is reminiscent of being in an MRI. The technicians communicated by speaker and I honestly couldn’t understand anything they said. It was like listening to Charlie Brown’s teacher. Wah wah, wah wah, wah wah. I would respond by nodding or saying something like, yes or okay.

The MRI machine is loud. It pops, it clicks, it hums. If you have ever heard the sound that a front-loading washing machine makes when the latch locks into position at the beginning of a cycle, that is one of the sounds you hear. It seemed like at one point the machine made a shimmy or two, like an extended vibration, or was that just the humming, intensified?

The technicians had told me that I would be tested for about 20-25 minutes. I think that this was not right. It seemed like I was counting the seconds to get a sense of minutes, and after a while I stopped. It was like collecting bucket after bucket of invisible seconds from a deep well but you don’t know how deep or big the well is.

I think that I was in the MRI machine for closer to an hour. At one point I regretted keeping my mask on because my face was getting tickly. When I wear a mask at work, I can adjust it periodically, scratch my nose, or remove it to sneeze or cough. Perhaps halfway through, one of the technicians said something over the speaker, maybe to say that they were starting the contrast, and all I could do was give a thumbs up and say okay. I don’t know if they could hear or see me.

When I was growing up, I used to read Reader’s Digests. That would have been back in the 1960s, and the joke pages were always my favorites. There was another feature that had some dramatic, inspiring true-life story of people who overcame impossible odds and lived to tell the tale. Oftentimes, these were POW stories set in WWII. These were the kind of stories that made a kid want to learn Morse code, or memorize entire volumes to repeat back at will, or to learn another language. Because those skills would help you survive a period of trauma.

Today was another Reader’s Digest moment. At one point I had to gather my attention and laser-focus it on concentrating on breathing my way through this process. Would the enemy break me? It would not.

Finally the MRI ended. I was able to get off the machine, and reclaim my glasses and my ponytail holder, and follow the technician back into the dressing area. We passed by the other technician speaking to an elderly woman in a wheelchair, explaining to her that they were going to takes images of her brain.

My technician led me on to the X-ray area. There were several people gathered in an office, and one nice lady came out to say that they had been looking for me and couldn’t find me. I told that I was probably somewhere inside an MRI machine. I must have been looking shell-shocked because she was gentle and kind and looked me in the face. She led me to another area with another dressing room so that I could remove my shirt and bra and put on another gown. After that was done, she led me into the actual X-ray room where she took a view from behind and the front and the side. For the side one, I had to hold onto a bar over my head and in front of me so that my arms were out of the way. The technician seemed to think that the views were acceptable.

Somehow I got dressed and somehow another technician presented himself to lead me to the EKG area. I sat in a chair in the exam room and we determined that he was going to put the sensors in an area around my bra and I would need to unbutton my shirt, but not all the way. At that point I am completely not bothered that I am in a room, partially concealed by a curtain, with an open door and a male attendant who is applying sensors to my upper body with my shirt mostly unbuttoned.

An EKG is fast. I buttoned up, and the technician walked me out. Because some of the entrances are closed due to COVID, he walked me to a closed entrance which is still an active exit.

I made my way to the car and sat for a bit. It was almost 4:30 and I have been in the hospital for about 3 hours.

I had joined a Facebook group for women with DCIS. I don’t know enough about what I don’t know, and these women’s stories are a wide range of hope, fear, and resilience. Many of the women are having to make decisions regarding testing, genetic testing, lumpectomy, single mastectomy, double mastectomy, reconstruction, radiation, and hormone-suppressing medications (DCIS is generally but not always hormone driven). A friend from high school had DCIS with reconstruction. A first cousin had DCIS last year. A distant cousin had invasive cancer and opted for double mastectomy without reconstruction. Some people say not to overthink it. Some people say to get all the information you can in order to make educated decision.

It’s a lot to think about. Next, I’ll see the oncologist, and then the oncology radiologist.

A Phone Call from Wandi

So, I’ve gotten my diagnosis that I have DCIS on the lower left side.

It’s now the weekend, and a beautiful Sunday morning, and I’m at the colony feeding the cats when the cell phone rang.

It’s Wandi from my obgyn’s office with the results of the pap smear. She said that they had been having some problems with their computer system in the office and she was trying to get caught up by making calls on a weekend. She tells me it’s normal, which I already knew because I had accessed my patient portal. I told her that we had some updates since I last saw her.

I told her that I had been diagnosed with DCIS on the left side. She said to wait a minute, she was confused by that, because wasn’t the obvious problem on the upper right?

Cancer cells are sneaky little things, aren’t they? I’m learning that.

I asked if Wandi had the results of the bone density test, and she did.

I’m normal. How that’s possible, I’m not sure, but I will attribute that to daily doses of Vitamin D as prescribed last year.

We chatted a bit more, and I am so grateful to Wandi for her phone call and taking the time to take care of her patients.

Next up, MRI with and without contrast, EKG, and chest X-ray.

The Diagnosis

I was at work when the call came in from the surgeon. I had already told my workmates and supervisor they I would be receiving a call and I needed to take it.

I skittered back to the break room with the phone to my ear and spoke to the surgeon. I had a pen in my pocket but no paper so I grabbed a paper towel.

He said that the results of the needle biopsy had come in, and then he took a breath and I knew. I knew if it were not cancer, he would have breezed right into that statement. He told me that I had DCIS and did I know what that was. I said I did. He told me other things like Not Invasive, Stage Zero, Meeting with Other Specialists, and Team Approach.

I scribbled on the paper towel.

He said that I would be getting phone calls from the oncologist, the oncology radiologist, and the breast care navigator.

I didn’t know he meant that afternoon. These people do not mess around and waste time, even though this is not an emergency.

Elaine called to say that she had scheduled an MRI on Monday, March 15, and that I also needed an EKG and a chest X-ray. The oncology office called to say they had scheduled an appointment on Wednesday, March 17. The oncology radiologist office called to schedule an appointment but I just couldn’t do it. I needed a breath.

The following week was to be a down week before all the specialty medical appointments started. The oncology radiologist office called that week to schedule an appointment which was going to have to be on Thursday, March 18. I had already requested the Monday and Wednesday off and now I was going to need Thursday but what the heck, I have a cancer diagnosis.

I messaged my supervisor and she told me basically that Thursday wasn’t going to work for her. Other people had doctors appointments and she didn’t have anyone to cover my shift.

My head combusted and exploded immediately.

She is asking me to consult with the oncology radiologist on Monday morning before I have even had the MRI, EKG, and chest X-ray. The consultation is to discuss the results of the testing after the testing has been done. A further annoyance is that she is neglecting to acknowledge that the doctor isn’t available until Thursday. Plus CANCER.

I can’t believe that a female supervisor could be this callous.

I reported her to her supervisor who is also in charge of Human Resources.

If she wants to butt heads, I’ve got a hard one and I need to practice fighting.