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One of the scariest experiences you may have as a newly-diagnosed breast cancer patient is entering a cancer center for the first time. Hopefully, this post of my treatment experience at MD Anderson Cancer Center in Houston helps make you more comfortable. Also, check out five steps to take before you start treatment.
Twelve days after diagnosis, I was at MD Anderson Cancer Center at 6:30 in the morning, lugging CDs and printouts of my health records and facing a full day of evaluation, prodding and filling out forms. My cancer center was experimenting with a new patient protocol. You had the option to have everything done in one incredibly long day, or you could return for multiple days of appointments. Since I lived closed, I went with the one day plan.
My time at MD Anderson Cancer Center begins
Before dawn on September 25, I was parking in the near-empty parking garage under the Texas Medical Center, a separate entity within the city of Houston. Mexico City has the City of the Dead. Egypt has the Valley of the Kings. Houston has the City of the Sick, officially called the Texas Medical Center. MD Anderson Cancer Center is one of TMC’s most visited destinations.
I chose to come alone for this first day. My girlfriend Cally protested loudly for such an easy-going friend. We finally compromised on Cally bringing me a late lunch and joining me for my four doctor’s consultations.
Learning the Cancer Center Layout
The Mayes Clinic is one of MD Anderson’s newer buildings, bright and airy with a grand second-floor lobby. Plush upholstered chairs, two-story windows to an outside courtyard, a baby grand piano that is often played by family and patients to pass the time. The center has a large circular info area with helpful volunteers. While men can and do get breast cancer, this is a feminine place. Not overtly through décor but covertly through an enveloping sense of welcome and caring.
I was directed up to the 5th floor and the Nellie B. Connally Breast Center. Nellie was a fierce breast cancer survivor and advocate and former First Lady of Texas. Here was another nearly empty space at this time of the morning but it was only minutes until I was directed into one of many cubicles in a business office.
Prepare for the paperwork.
Good cancer centers attract many international patients and employ interpreters from many countries. As I sat waiting for my counselor, I listened in on a husband and wife from Mexico in a nearby cubicle checking in. It was a preview of my session
“Will you be using insurance or paying for treatment by yourself?” Pause for translation “¿Va a usar su seguro o pagar por el tratamiento usted mismo?” Pause for the answer and on and on. I was immediately grateful that I could talk and listen directly to the people that were going to hold my life in their hands.
My session was the same, only without the long pauses. After endless questions, signatures, and more copies added to the bag of stuff I was lugging around, I was sent off to the first of three procedures to confirm I still had cancer and belonged here.
It’s official when you get an ID bracelet
The administration desk and waiting room were full when I returned after from the business office. A cancer waiting room is like the world in a snapshot. Patients and family or friends speaking different languages. Different ethnicity and races. Urban and rural. Young and old. A cancer diagnosis connects you with a giant human family!
I sat alone, waiting for my name to be called (now you get a text on your phone). In a few minutes, I was summoned, and my official id wristband was attached. I became MD Anderson patient 1xxxx1, a number I now know as well as my social security number. This wristband is the official adornment of a “1 in 8” lady.
Meeting my co-patients in the dressing room
I wore it as I waited with other “1 in 8” woman in a cold dressing room to have my boobs squished a 10th time since the questionable mammogram. A Middle Eastern lady sat forlornly in a gown along with the rest of us. Her interpreter hadn’t arrived yet so she was lost as the rest of us each shared a brief history of our cancers. We smiled and nodded at her, hoping to give unspoken support.
Surprisingly the mood was light. “What are you in for?” Of course breast cancer, but we narrowed it down with terms like invasive, non-invasive, lobular, dcis, estrogen positive. You’ll find yourself with a whole new vocabulary.
I won’t bore you with the details of the mammogram except it was more intense. The tech giving the tray one…more…crank… to squish any hidden cancer cell…crank….into view. Then back to the dressing room to wait with other half-naked sisters while the technician makes sure that the pictures were precise.
Bring your records with you
While I was waiting, an administrator asked if I had sent all my medical records over. “Yes, at least a week ago,” I answered. “It doesn’t look like they’ve been scanned into the system,” the clerk told me. I hefted my Indian-blanket tote up onto the desk. “I’ve got hard copies of everything in here, “ I said and learned that sometimes all the technology in the world doesn’t trump the redundancy of a physical copy.
After reviewing my new scans and the ones in my tote, I was sent off to another darkened treatment room for more ultrasound and another biopsy. A double check of the suspicious lymph area was once again clear. “Your medical records haven’t been scanned into the system…,” the doctor started to say. “Got ‘em right here,” I said lifting up the blanket tote again.
The doctor took my prior scans from my diagnosing clinic and put them on the light board. “This was a good catch,” the doctor said as we looked at my tumor together. In hindsight, I guess cancer can be a lot like baseball. A good catch can change the whole outcome of your game for survival.
Time for a break
It was lunchtime when my tote and I left the Breast Center to go downstairs for a break. I sat out on the second-floor courtyard and tried to read a book I’d brought but my mind wanted to wander. For decades I’d raised a family and created a successful career through willpower and ability to lead and control situations. I didn’t feel sick. In fact, I felt spectacularly healthy after my recent canoe trip to the Canadian boundary waters.
Being a patient in any cancer center requires you to put yourself and your trust in someone else. The only experience I had of that was when getting facials, manicure or massages. So I decided my time here at MD Anderson was going to be an extended spa vacation where I would be pampered and healed. We all know spa sessions aren’t necessarily pain-free, but the outcome is worth it. Most importantly, problems at work and at home needed to take a back seat to peace of mind when you are a cancer patient. Remember Step 5!
A second pair of ears
Sometime in the early afternoon, I took elevator T and returned to the Breast Center. After one morning, I was starting to know my way around this new neighborhood. My friend Cally met me upstairs to provide another pair of ears for my marathon doctor consultation, a good thing to have.
As part of that new one-day protocol, we met with my surgeon, radiologist, oncologist, and my assigned nurse practitioner. Each doctor told Cally and me who they were and where they fit in with my treatment plan. I liked this mass meeting of the minds. If I had a question, and I had lots of them, I didn’t have to wait for a later consultation. The doctors were all present and could give me an answer or work through it with me.
The least disruptive treatment plan
My cancer was a good candidate for a new combined treatment called Brachytherapy. A lumpectomy was the first step with a clear margin (cancer-free area) cut away with the tumor. A few days later, a small metal umbrella-like appliance would be inserted and opened in my still-healing incision.
A day or two later, I would start a week of twice-a-day radiation treatments using the umbrella as a conduit. Then they would yank out the umbrella, put a band-aid on the incision and give me a refillable prescription for a daily chemo drug like Tamoxifen or Arimedix. Every three months, I’d get re-checked for the next couple of years.
I’m not sure
The “invasive” description of my tumor still bothered me. It was fall of 2013. Angelina Jolie and some other high profile women were having preventative mastectomies. I was willing to go through the extra hassle for peace of mind. My doctors thought that was overkill but sent me down the hall to talk to a plastic surgeon.
The plastic surgeon looked like a 21-year old female surfer, but she gave me a very non-complicated overview of what a double mastectomy would be. I was still operating with a “get it out, get it out, get it all out!!!” mindset but getting all the advice of my doctors in one setting made it easier to decide. I’d do the lumpectomy with radiation. Another go-around with my doctor team to agree on a date for surgery and radiation. Then my nurse practitioner took me to another room to start a physical.
End of a long day
By 5 pm, I told Cally to go home. I had one more appointment to see whether I needed to have my cancer typed for further testing. It was getting dark when I finally headed back to the parking garage. I’d spent the entire day, dawn to dusk, adjusting to my new “home” for October.
My disability leave started at the beginning of October. Some part of twenty days in October, I was at MD Anderson Cancer Center. I got to know the cafeteria and the enticing gift shop. I had a favorite lounge chair in the 2nd-floor courtyard and was settling in for my mandatory vacation.
My surgery was scheduled for October 11
October 9th and 10th were spent getting pre-op tests including an interesting nuclear injection to see how the tumor is reacting and to highlight any nodes that may be in danger. It stung a little, and you have to give the radiation time to work through parts of your body. I had it done again before surgery the next day. While I waited to go under the knife, a nurse would come in and wand me with a Geiger counter.
My lumpectomy was an outpatient procedure through I once again got to the hospital before dawn and didn’t get back home until early evening. I was loopy but pain-free. Except for a metal spacer left in my boob for the eventual radiation appliance, I felt unscathed. Family life goes on, and my daughter took me out to a hardware store the next morning to meet a dog she wanted to adopt from a rescue group. About 3p that day, I suddenly needed to lie down. I didn’t feel tired, but my body was taking charge.
Inserting the umbrellas
My surgeon, Dr. B. was like I’ve always imagined a surgeon would be. She was direct, efficient and not given to small talk. She was also tiny, maybe not even five feet tall but she always wore beautiful high heel pumps. I’d learn to recognize the sound of her purposeful stride.
On October 15, my blessedly bossy girlfriend Debbie took me in to have my incision checked and my “umbrella” inserted. Debbie, Dr. B and I had something in common. A co-worker who shared our offices in an old mansion with hardwood floors called Debbie and I the “Stompinest women” he knew, for the echo of our footsteps when we arrived.
When Dr. B marched into the room, I was already on the examining table, with my injured boob exposed. The doctor started to examine the incision and get everything in position to install the umbrella. Debbie crowded up behind her. “Are you a med student?” the doctor asked. “No, I’m her friend, “ Debbie answered and continued to peer over Dr. B’s shoulder and ask questions. With Debbie, I felt like I had a medical advocate right in treatment with me!
Sharing is caring
The pain was tolerable with the local anesthetic, so there was no need to give me anything stronger. Turns out I could have driven myself to this appointment but Debbie enjoyed the visit and seeing some of the inner workings. A cancer diagnosis has a way of creating an invisible wall between you and others. Sharing some of the nitty gritty moments broke down that wall.
Getting ready for radiation
The following day, I was back in an MRI machine checking the position of everything for radiation. Dr. S (my radiologist) and physicists were making measurements and determining dosage. This would be a pinpoint attack at the tumor bed, euthanizing any errant cells. Collateral damage would be limited to a very small area.
With the umbrella in, opened and now correctly position, I had this odd metal wand sticking out from the skin below my underarm. I was like one of the original talking dolls, “Chatty Cathy” only with a lever instead of a pull string.
My week in radiation
The radiation center is on the ground floor of the Mays Building in MD Anderson. Radiation treatments are basically done in bomb shelters but I didn’t realize that the first day or so. I thought the radiation folks were on the first floor because your treatment can be relatively quick each time, 30-40 minutes so it is easy to get in and get out. Turns out dozens of bomb shelter rooms are too heavy to be on higher floors
My radiation therapy is where the spa vacation mentality paid off. I was scheduled for two-a-day treatments, one between 8 and 9 in the morning and the other between 2 and 3 in the afternoon. The first day, I experimented with wearing workout clothes and walking shoes. I was met by my technician, an athletic, compact young guy who had me remove my sports bra and workout top and lay down on a metal table centered in a large room.
My blast room routine
Every day, he suspended a giant X-ray machine over my breast to check that the umbrella hadn’t moved. Then he called in the physicist. That guy looked unnervingly like an accountant or sales manager. The physicist pulled over something that looked like a fan on a stand with a ray gun in place of the fan. The protrusion from the umbrella had multiple strands. The ray gun had places to attach each of the strands.
After I was securely attached to the standing ray gun, the physicist and my technician hurried out of the room. An alarm sounded like the dive warning on a submarine. Then everything was quiet. It was just me and the ray gun. If I’m ever abducted by aliens, I can’t believe it would be any stranger. After five to ten minutes, the alarm sounded again and people came back in to unhook me.
This really is a bomb shelter
It wasn’t until the second day that I realized an alarm I heard twice during each treatment was the huge steel door closing me in and sealing me off from the rest of the world. “See you back at 2”, said my tech and I was done. One down, nine to go. This was a piece of cake so far.
My spa-vacation plan
Less than two miles from MD Anderson are some of the most beautiful places in Houston. Hermann Park with its zoo, outdoor theater, Japanese garden and all kinds of walking paths. The museum district with dozens of galleries and collections. Rice University, one of the prettiest college campuses I’ve seen.
I based my spa vacation in the Rice University/Rice Village area. It only took minutes to drive from MD Anderson to the Rice University stadium where I’d park. After a short walk to La Madeline in Rice Village for a country French breakfast and a couple of cups of their wonderful dark coffee, I’d meander back to the Rice University walking path.
Exercise and education
Under the unrelenting shade of the old-growth oak trees, I’d stroll three miles in a pretty pocket of Houston many might not know exists. While walking, I listened to The Invention of Air on my iPhone, the not-well-known story of Joseph Priestly who discovered oxygen. What if cancer may someday be cured or at least made a chronic condition by future discovery of such a seemingly innocuous substance? Then back to the blast room for another session.
At the end of the tenth radiation treatment, I no longer needed the appliance implanted in my breast. Before I had time to register what was happening, the tech placed his hand gently on my knee and Dr. S yanked out the folded-up umbrella. It hurt for a few seconds but was great not to have a few inches of metal tubing poking out under my arm.
Ringing the bell when radiation is over
Then my tech walked me out into the main hallway to ring the bell, a tradition when you finish chemo or radiation. This ritual is as much for you as it is for the other patients around still going through it. Even for my very abbreviated duration here, I was very moved when it was my turn to yank the bell chord.
My daughter was picking me up after my session to take me to Austin to see her compete in her first Half-Ironman. I did not plan to be back at MD Anderson for a month though I did have to return the next week for skin irritation at the site of the radiation. That last appointment of my spa vacation at MD Anderson was October 30.
Return to work with a different attitude
I returned to work in the middle of November after a cold virus found an opening in my weakened immune system, probably from stress. The month of letting go and letting someone else control my direction has been very good to me. The four weeks of pampering myself, taking time to enjoy my La Madeleine breakfast, the walks at Rice University, the engaging and caring people I met and shared a lifeboat with, changed me for the better and for good. In this, my cancer diagnosis had been a gift with ugly wrapping.
My sweetest memory in treatment
One of my very sweetest memories, not just of my time at MD Anderson but maybe in my life is this one. Anytime I had an hour or less between appointments; I sat in a comfy stuffed armchair in the main lobby on the second floor of MD Anderson’s Mays Building. Here I luxuriated in private performances by patients, family members or volunteers who would play a few songs on the lobby’s baby grand piano.
On one glorious afternoon, a woman brought a harp and began to strum it. A man, drawn by the music, came over and started accompanying the woman on that baby grand piano. My heart filled and expanded and rose in a harmonic vibration as those two stringed voices danced and entwined with each other. Pure, blessed, utter peace and I had cancer to thank for it.
I hope sharing my experiences with my treatment helps you as you take your own cancer trip. Sometimes just having a little knowledge about what’s ahead can make it less frightening. Let me know what works for you. We’re all wishing you the best.