“It is what it is.”
That’s the motto I’m using these days. Accept the things we can control and let go of those we can’t. At first, I thought sharing my health journey with you would be easy, informative and educational. But when your doctor tells you, “Well, I have good news and bad news” you know you’re in for another twisted and unexpected challenge. When it was all “good” news, it wasn’t a problem to relay my experiences through my blog posts. But when it turned more serious and scary, my fingers didn’t tap on the keyboard quite as easily.
Let me bring you all back to speed. My surgery to remove the atypical ductal hyperplasia was on March 21. Here’s how that day went….
The clock said 2:47 am. I woke up and stared again at the number. The clock slowly turned to 2:48. I tried to get comfortable in bed but my mind just wouldn’t turn off. I knew that I needed to be at the hospital at 5:30 am for my upcoming surgery. My logical brain told me to just breathe and try to get a little more sleep while my emotional brain was on overdrive creating numerous possibilities of what might go wrong – how I might oversleep through my alarm, how the surgery might be cancelled as well as many other negative possibilities. You name it, I thought about it until 4:00 am when I saw the futility in my attempt to sleep and decided to get up.
Now, I sat on the edge of my bed and took a few deep breaths setting my intention for the day ahead. I was scheduled to have surgery at 8:30 am with Dr. Toosie. A wire-localized excision of the left breast to be exact. But before that, there was lots to do. The pre-op nurse from the week before instructed me to wash my entire body with a cleansing solution the night before and repeat that morning. I didn’t quite understand why I needed to cover every centimeter of my body when the operative field was limited just to my left breast. “Don’t argue, I said to myself, “You’re the patient, not the doctor.” Oh, yes, that’s right. I washed as instructed, put on my comfortable clothes, arranged what I needed to bring. My dear friend, Maren, picked me up at 5:10 am and we were off to the hospital.
After entering the hospital, I was to go to registration. But my mouth was so dry- like cotton was stuck to my tongue and lips. I needed a sip of water – I hadn’t had anything by mouth since 9 pm the night before and my mouth felt like the Sahara desert. I walked into the main reception area and asked the security guard where the nearest drinking fountain was. Yes, I knew I couldn’t guzzle a lot of water, but just a sip, to water my tongue and lubricate my lips. Across from the fountain was the chapel. How convenient, I thought. I’m not the most religious person as many of you know, but I do believe that there is a higher spirit/power/God that looks over us. I quietly entered the empty chapel and took a seat in the front row. Excerpts from the bible were written on the altar and I read each of them very slowly. I knew that at that time, I just needed to trust that all would go smoothly and to have faith – faith in all the hospital personnel, from the pre-op nurse, to the radiology tech, to the scrub nurse to my surgeon, Dr. Toosie and in myself.
After 5 minutes, I walked back towards registration where a friendly volunteer asked me if I was there for surgery. She knew my name and graciously led me to registration and then to the pre-op area. She was in her 70’s, had worked there for over 14 years and loved volunteering there. I thought, “Wow, she is so friendly and helpful – and it’s 5:30 in the morning!”.
At pre-op, after another scrubbing with the anti-bacterial solution, I put on the saggy hospital gown. I must admit- not a gown for the red carpet – but it got the job done. The pre-op nurse was amiable and also in a great mood – which kept my mood light and happy. Soon the intravenous line was in my right hand, fluids were flowing and I was resting under a blanket that was insufflated with warm air. I really liked that “bear hugger” as they call it.
Then, I waited to be escorted to the radiology department to place a wire into my left breast. This was needed to identify the clip which had been placed during the stereotactic biopsy. Again, my friendly volunteer escorted me to the radiology dept where the radiology tech and radiologist injected local anesthetic into my left breast and then threaded a wire to the exact location of the clip. This was done under mammographic visualization so my breast was compressed in a tight vice. I didn’t want to move lest I interrupt and disturb their procedure. After I looked at the wire protruding from the needle carefully planted on the top of my left breast, I became a little bit queasy. At that point, I made a joke and stated that on Wednesday mornings, I usually played in my tennis league, but that this experience was way more fun. We all chuckled, then off to women’s center for surgery.
Dr. Toosie greeted me there, reviewed the procedure and obtained consent. Prior to this time, at least 4 other hospital personnel must have asked me my name, date of birth, any drug allergies and what procedure I was having. Initially, I thought they were just testing if I was awake at the that time of the morning, but soon realized that this was protocol – to make sure the correct patient was having the correct procedure on the correct body part. Yes, repetition was my friend. We didn’t need any medical errors, right?
I did attempt to ask Dr. Toosie, “But, what if it turns out to be worse than we…. – what if it’s DCIS or invasive breast cancer? Before I could say “worse” she abruptly stopped me and said, “No, we are not going there. Whatever it is, we will take care of it. Only healing thoughts now.” Ok – Doctors orders.
The anesthesiologist asked me what type of music I wanted to listen to while falling asleep. I wanted mellow, so I voted for Enya. Soon Orinoco flow was piping through the operative suite while a plastic mask infused oxygen through my nose. “Healing thoughts”, I said and then I was asleep with a laryngeal -mandibular airway, also known as LMA, delivering general anesthetic.
I awoke in the recovery room hearing cries of pain from the patient next to me. Apparently, he had undergone spine surgery and was in severe distress– not at all like how I was feeling after my one-hour excisional biopsy. Soon, the nurses administered adequate pain meds and all was calm.
I napped in between minutes of quasi- alertness, realizing that I really had nowhere to go, nothing to do, no one to attend to. There was literally nothing I needed to do – what a concept? I succumbed to resting and comforted myself in the bed. After about an hour, the recovery nurse asked if I wanted to sit up. I had already become restless in my bed. She said I looked so awake for just having had surgery – I must’ve fooled her, my body was awake but my brain was still a bit sedated from the general anesthesia and a poor night’s sleep.
My friend, Courtney, came to get me in the recovery room and then they led me by wheel chair to the car. Courtney had a bottle of water – omg – water – I felt like I had hit the jackpot. Then she took out a bottle of Gatorade too! Eureka – we’ve found gold!
I napped for a few hours, then took some sips of my Gatorade and met Courtney downstairs of my house. She was quietly working on her computer, typing away with my kitties lying next to her on the couch, making sure that I was okay over the next few hours. All went well until the pathology results returned.
Again, it seemed like an eternity for them to come back. Remember, my initial results from the stereotactic biopsy took over 4 days when the usual estimated turn-a-round time is 2-3 days?
Well, after 5 days of waiting, I texted Dr. Toosie and inquired about the results. She said she would call the pathology department and get back to me. Her following text said, “Call me as soon as you get a chance.”
I was in the office seeing patients and knew that I needed to call her. I braced for the results. She said solemnly, “Well, I have good news and I have bad news.” My heart skipped a few beats and I took another deep breath. “Ok, give me the bad news first.” I said. She then told me that there was cancer – invasive ductal carcinoma to be exact. OMG- I thought- my biopsy did turn out worse and now it’s invasive cancer. Then she said, “But the good news is, we got it out.” “What do you mean we got it out?” I questioned. “The margins are negative. All of the cancer was removed with the excision”, she stated. By now, my brain was filled with thoughts of radiation, chemotherapy and possibly more surgeries, missing work, losing my hair, etc. Luckily, after reviewing the pathology and speaking more at length with Dr. Toosie, I was able to grasp exactly what was happening.
My stereotactic biopsy had only glazed the outer area of the abnormality. A result of ADH on stereotactic biopsy usually comes back the same diagnosis after an excisional biopsy. But in approximately 10% of cases, the excisional biopsy will reveal more severe disease like Ductal Carcinoma in Situ (DCIS) or invasive cancer. This was the situation in my case.
So now what? Dr. Toosie gave me the results of the markers – receptor status, to be exact. The tumor she excised was Estrogen Receptor (ER) and Progesterone receptor(PR) positive and Human Epithelial Receptor for Growth Factor (HER-2) negative. This was the best result to have.
I had a lengthy appointment with Dr. Toosie yesterday and she explained what needs to happen next. She will need to “stage” the cancer to see if it has invaded my lymph nodes or other parts of my body. This is done with a “sentinel lymph node” biopsy. In addition, a CT scan will need to be done of my chest.
Now, I can write about this and relay this part of the journey. Immediately after receiving the results I felt quite raw and vulnerable, not knowing how I was going to deal with this. But then, after realizing that we most likely caught this early, I could get my fingers to finally tap the keyboard and write this blog.
Here are the next steps. Dr. Toosie will try to get my insurance to authorize a new radiologic treatment that is performed at the time of surgery, called “intraoperative radiation therapy”. This can only be performed if the sentinel lymph node is negative – meaning the cancer did not spread to the lymph nodes in my left underarm area. Then, I would receive only one treatment of radiation rather than weeks of radiation therapy.
We haven’t yet scheduled the surgery date, but both Dr. Toosie and I are hopeful that the tumor has not spread. Given that the margins of the excisional biopsy were negative, odds are in my favor. Like all parts of life, we are never sure what can happen.
That is why I have been saying my mantra. “It is what it is.” This does not carry a negative connotation, but rather one of realism and strength with whatever happens.
As I have said before, I am blessed to have such incredible patients who have given me support and courage through this challenging time. I am also blessed to have a wonderful doctor, Dr. Toosie, who has guided me through to this point. Because of her stern recommendation to undergo surgery , the cancer was caught early with negative margins.
Please know that I am doing very well and will keep you posted. For now, I’m continuing to take deep breaths and placing one foot in front of the other.
In health and happiness,
Dr. Diana Hoppe