The first indicator it was going to be a tough day was driving up to the front door of a beautiful state of the art Emory Cancer Center and seeing a mom holding her bald, sleeping 4 year old on her hip. My inner voice said, “Brace yourself.” I put my emotional responses to the side and put on my logical mind as we stepped inside to a place where the floors have names. The elevator moved us from ‘Courage’ (1st floor) to ‘Hope’ (2nd floor). We exited to find a large waiting room filled with people…some had hair, some had wigs, and some were bald. Surgical masks were in place on a handful of patients, while others breathed freely. “Swallow hard and make your feet walk.” My inner voice again. My instinct is to run far away, so my voice must give me instructions. The advantage in all of this is that we have done it before. That is also the disadvantage. Three of the four of us have faced these kinds of rooms previously. None of us ever wanted to return, yet here we are. “Chin up, eyes ahead, move forward.” In some ways, it is not as scary as the first time. In some ways, it is far worse. The stakes are higher. The outcome is sure, it is just a matter of when. Here, dying is a reality that everyone faces. You cannot get around it, so you must face it head on. So on we went.
In the waiting room, Louise asked me about the masks. She either doesn’t remember the low immune system issues that come with chemo, or she never saw anyone wearing masks in her smaller Gainesville oncologist office. I on the other hand, have stood in a waiting room, my eyes peering over my mask, trying to guess which people to sit next to would be the ones with the fewest germs. I have sat in church and worshiped God in song with a masked, muffled voice during flu season. My inner voice prompts me again before the memories overtake me. “Answer her question.” I told her that the masks protect those who are going through chemo from germs that could be dangerous to them. She seemed to understand and we waited our turn. She is not very patient, but she knew that this was necessary. They told us to allow three hours, and that helped us all to settle in for the wait. I worked on my computer, Louise faded in and out of sleep, Bill read a book and Ray filled out the mountain of paperwork that required to enter Cancerland. After about 40 minutes, our pager went off…you know the kind like at a restaurant…not as much fun when you are waiting to see an oncologist.
In the back, there are signs on each exam room door reminding all who enter to foam their hands first. The privacy curtains in the rooms are made of material with words like hope, courage, inspiration, and perseverance on them. These things remind us once again of where we are. Soon a nurse came in to interview us. In my mind, logic took over, pushing emotion out for a time. We started at the very beginning, all adding our two cents worth to the story. She took notes, occasionally asking questions. She explained that Louise had 1P19Q that was borderline positive. They performed this chromosome test on the tumor. There is a lengthy explanation, but the bottom line is that this probably means that she will respond well to treatment and have a better prognosis. Positive is good response, negative is bad…Louise is closer to the positive than the negative. The borderline result however, would keep her out of a clinical study that is currently being conducted.
Then the nurse did a thorough assessment of Louise and her skill level. She asked questions, had her raise her arms, touch her fingers to her nose, close her eyes, repeat items back to her, followed her finger with her eyes, write a sentence, follow written instructions, and a whole host of other things that tested everything from her memory to her physical abilities. Again, the nurse took notes throughout the examination. When she was through, she left to get the doctor who had been reviewing the CD we brought of the scans Louise has had.
The doctor came in and introduced himself. He is from Argentina so he has a heavy accent, which forced us to concentrate in order to understand him. He was very knowledgeable as we expected. He did a few repeats of assessments the nurse had already done and asked more questions. He got right to the point…his recommendations for treatment. Radiation is his first choice of treatment. He did not recommend chemo to go along with the radiation. There are three reasons.
1. It is not a standard treatment.
2. There is no data that is definitive that it works more effectively than radiation alone.
3. Louise is in a higher risk category for it to be toxic, when combined with radiation. That risk could shorten rather than lengthen her life…not worth it.
His suggestion, because of these reasons, was that she first have an MRI with contrast to use as a baseline. Then she undergoes 6 weeks of radiation, 5 days a week. Then she should rest a month, before having another MRI with contrast to compare to the first. If the radiation works like we hope, she would not have to have chemo until the tumor starts to grow again. To track its growth she will have to have an MRI every three months. Once it begins to grow, then she would have the chemo treatment called temodar, regularly. So he suggests holding the chemo until it is evident that it is needed.
Next, he gave the prognosis based on the kind of tumor and the kind of treatment, which no one else has been bold enough to say out loud…3 to 5 years, maybe more if she responds well. We knew our time with her was limited. Now we know that we are simply trying to buy more time. To know it in your head is one thing, to hear it said out loud is quite another. “Breathe” says the inner voice.
Louise had more questions for the doctor about her eye…he says she is ready for the ophthalmologist because her double vision is gone. About her recent back pain…he says see her primary care physician to check for kidney infection…then to her oncologist to make sure the breast cancer has not spread to her back. Brain cancer does not spread, but breast cancer can. He wants to rule that out. When you have had cancer before, a hangnail can cause the fear to rise up that cancer is everywhere in your body. It is a fear you live with always hanging around in the back of your mind. This back pain is causing that fear to rise to the surface in Louise. We need to rule out some things and we pray it is only muscular from over doing it around the house. About her medication…the nurse was very firm with her that she is NOT to reduce her medicine or cut it in half as she has been doing. Radiation causes the brain to swell, which can lead to seizures, to cut herself back on her anti-seizure medicine is unacceptable. I think Louise might have gotten it this time. It is serious. At lunch, she asked Ray where the other half of her pill was because she wanted to take it. Lesson learned…we hope.
After the meeting, while Ray was handling the paperwork to check her out, I had a conversation with Louise. She asked me to explain what I thought the doctor said in terms she could understand. I did, staying true to facts and logic. Emotion gone for the moment. She said, “well if I live long or if I live short, I guess I will be going to doctor’s offices until I die.” She didn’t mention if she heard the prognosis, but I think she understands that her time is limited. Her focus is on her ability to continue to move and be with Ray. I wouldn’t say she has given up, in fact I think she is gearing up for the fight. She didn’t seem agitated or overly upset, just matter of fact. The fact that the chemo is not right around the corner seemed to be a relief for her. I can tell you, it would be a relief for me. Tomorrow she sees the radiologist again to prepare for radiation to start and to set up her next MRI. Once again, the fact that she has been down this road before is both a blessing and a curse. Fear of treatment isn’t really an issue now. Fear of the outcome is rising up. We are all trying to think positive as we hope and pray for the best possible life for Louise. We covet your prayers as well. “Pray.”