No one wants to be visiting an oncology department. There is a certain heaviness and tension that is present when you are there. While the administrative staff are amazingly friendly, it is still a disconcerting place to be. Some are there with their elderly parents, some are there with their spouse, some are there with friends, and others are simply alone. Some of the patients are bruised on nearly every square inch on their arms and fingers from being stuck with needles. Some can barely walk but their drive to keep pushing on wills them to walk.
Quite a few people have looks of exhaustion. Most of the looks are all very similar—somber and concerning. However, while we certainly didn’t want to be there, we were slowly pulling together as a team. Lyn and I realized we needed to be on the same page and be prepared for the battle ahead of us.
While Lyn had some anxiety, the anxiety was not due to the cancer. Her main concern was her inability to communicate due to the stroke. Once I was able to learn her needs, it made us function more as a team, and it made her feel much more at ease. To be honest, at first, I did not realize how being awake while alone created anxiety.
Lyn was on high dose steroids, which gives anxiety. Due to the steroids she spent many hours awake and alone. She wanted me to sleep and have energy, but it was extremely difficult for her. Oftentimes she awoke very early in the morning, while I was sleeping. However, my sleeping created anxiety for her because she felt trapped in her head due to the stroke. Eventually she was able to communicate this to me in her writings, and we pulled together. I understood the importance of being present with her. Coming to this revelation made a huge difference in the peace and security she felt.
A few days ago, I looked back in Lyn’s journal and she wrote, “I am about to go stir-crazy the first thing in the morning.” She also wrote, “If I could talk, I would feel better,” and, “Not being able to talk has been traumatic.” So, Lyn’s anxiety was stroke related: talking, swallowing, drinking, and communicating. However, my anxiety came from the cancer, prognosis, and treatment.
By the day of her oncology appointment, we had exchanged our fear and anxiety with confidence and peace. When Lyn was first diagnosed I was in a mental fog. I was very fearful of the unknown, and we knew enough about melanoma to understand that a single spot of melanoma on the skin is serious in itself, but when it is into the body, it’s very deadly. However, Lyn’s quiet confidence, and her faith was truly amazing, and we pulled together as we were able to communicate about our concerns, fears, anxieties, and questions.
It had been sixteen days from the time of Lyn’s stroke and cancer diagnosis to the first main oncology appointment. Our preliminary oncology appointment (at Day 5) was only to confirm and set the wheels of treatment in motion. Now on this appointment we would discuss the complexity of her cancer, treatment, prognosis, hope, and what we faced going forward. Additionally, this doctor would be Lyn’s doctor that controlled and orchestrated her treatment and medications going forward.
Once the doctor came into the room, and the introductions were done, he explained exactly what happened. We loved the doctor, his demeanor, the explanations, and the confidence he displayed. He took the time to ask questions about how Lyn was feeling, which she was able to answer only by a nod of the head, or to have me expand on the information.
The doctor began to outline the possibilities of treatment. As explained in a previous blog, we had possibilities to consider (immunotherapy; oral chemo, and targeted radiation). The doctor explained the pros and cons of each treatment option, and even diagramed for us the treatment options to help us make choices. While we were not looking forward to being there, we were thankful to be there with this doctor.
What was helpful during this appointment is that we came prepared to talk, ask questions, and seek the truth about the prognosis. Every cancer patient wants clarity on that first appointment, so coming prepared is critical. Sitting down as a team and writing out the questions is very important. We did this for every appointment because one never knows how an appointment will go. Some appointments are emotional, and it’s easy to forget to ask the question. On some appointments the doctor may choose to talk about future treatments, a change in medication, or upcoming scans, and again, it’s very easy to walk out of the appointment without asking questions.
When it was our turn to ask questions, the first question we asked was, “Can Lyn get rid of this cancer?” The doctor carefully answered our question. He said, “Yes, she can, but it’s extremely complicated.” He went on to talk about how difficult melanoma is to treat, especially in the brain and lung. However, he stated that it was possible with these new treatments and explained how we might get to the point of healing. The doctor didn’t guarantee anything, but he left us feeling positive and hopeful.
We asked several questions, such as if Lyn could continue to run and exercise. Lyn was a runner and she wanted to keep being physical to strengthen the body and fight the cancer. Lyn was also interested in if she needed to be on a special diet. For Lyn’s type of cancer, the doctor was not too concerned with the type of food. He wanted her to stay as balanced as possible on her eating to keep the weight consistent.
Lyn was very concerned with possible side effects from treatments. The doctor answered the questions, and two treatments had fairly significant side-effects, and one had minimal issues.
As we engaged in conversation, we made it clear that we were guided by our faith in God. The doctor knew that we believed in the power of modern medications and treatments, but we also believed in the ability for God to bring healing. Before we left the appointment, the doctor pulled his chair over, held out his hands, and asked if he could pray for Lyn (and our family). It was a very unexpected prayer, and at this point we knew God had his hand in teaming us with the right doctor. We experienced the health plus the care part of treatment. Many times, the care part is missing—not with this doctor. What impressed us the most was that the doctor took the time to sit with us and ensured that all our questions were answered. This added to our overall peace.
Being prepared for our first oncology appointment (and any appointment) was important because it helped us receive needed answers. We did not want to walk away from an appointment and have a nagging question that we forgot to ask. We were able to communicate via email, however, there is something that is complicated and less effective than staring into the eyes of the doctor.
Lyn was desperately trying to move forward in her ability to speak, and to get her cancer treated. The time we had with our doctor was almost sacred to us, because it was a matter of life and death. Our time with the doctor was limited as is, so coming prepared for our 30-minute meeting was critical in our eyes.
Coming prepared not only provided us with needed answers, it allowed us to walk away feeling a level of control, and peace. We could not control much, but we could control coming to the appointments prepared. The doctor also enjoyed our preparation because he was able to better understand how certain medications needed to be adjusted, changed, or eliminated. Being prepared helped us have the best quality of life possible, despite the complexity of her situation.
One of the best benefits of being prepared was that it allowed us to continue to live and have fun! We had fun during her cancer battle! We planned vacations and went out of town. So, although Lyn was battling her disease, and her treatments were exceptionally difficult, we still wanted to define how we desired to live. While we could not control the future as far as cancer, our preparation helped us in many aspects of the future and living to the fullest.