Communicating with the Doctor

When someone gets a cancer diagnosis, there is the feeling of a complete loss of control. This was true for my wife, and as her caregiver, I felt the same. It is also completely natural to be emotional, agitated, irritable, and angry because one quickly realizes how out of control things truly are. Additionally, because there is such a lack of control, I was fighting the emotion to take charge and demand answers. Unfortunately, the emotions or the demand for quick answers do nothing to change the situation.

When Lyn had the stroke, she was placed in the intensive care unit (ICU) for three days, and step-down care for an additional day. Lyn’s stroke was serious and at first it looked like she may have a lengthy hospital stay. Not only had Lyn lost all ability to talk, she also could not swallow. She would not be released until she could swallow liquids and food. During this time, we attempted to wait patiently for answers. While we received the firm diagnosis of stage-four cancer, we would not have the treatment direction for two-plus weeks for the brain cancer, and an additional two weeks for the lung cancer.

Waiting for answers and treatment was very difficult. By the time the first appointment came, there was a feeling of dread and fear, mixed with anxious relief. It was the strangest feeling because we were almost wanting the bad news, so we could treat it! It’s almost impossible to explain the feeling to be honest.

Once we received the treatment options, and had the positive experience with Lyn’s doctor, we were ready to start treatment. It was interesting when Lyn’s treatment was outlined by her main oncologist. As mentioned in an earlier blog, we had to make the decision on what treatment we would select. The doctor outlined the disease, options, side effects, and benefits of each drug and treatment, but we had to make the final decision.

We decided on Stereotactic Radiosurgery (SRS), which was high-dose targeted spot brain radiation, and immunotherapy, which was administered by IV every two weeks in the infusion lab alongside chemotherapy patients. As a side note, former President, Jimmy Carter also had melanoma brain cancer, and he also had SRS, and it was successful. The third drug was a powerful targeted chemotherapy pill that we decided to save for later.

As the doctor was explaining the treatment process, we were given a set of guidelines that we were asked to consider and follow. It was at this appointment that we truly had to trust Lyn’s doctor, and his expertise as the Chief Oncologist. While we wanted to seize control, we recognized that the doctor wanted the best for Lyn, and he had the expertise.

The first thing the doctor explained was that we needed to communicate with him immediately when there were signs of worsening symptoms from the stroke or cancer. Worsening symptoms could include anything from new tumors appearing, vision problems, or lack of coordination. These could all be symptoms that the cancer was impacting the brain, getting into the bloodstream, or into the lymph system. Additionally, we needed to be aware of medication allergies.

The medication allergies needed to be monitored closely because they could be deadly. Every day we had to monitor for rashes, swelling, lack of energy, the color of urine and stool. It was a constant monitoring from morning until evening, and it was exhausting. Many times, Lyn would ask me to check something and as a result we needed to email or call the doctor immediately. Sometimes the doctor would have us upload pictures and email him.

The second guideline was to stay away from the advice of friends. The doctor asked us not to change or alter treatment based on the advice of a friend that went through cancer treatment. The doctor said, “I am the expert.” He wasn’t saying this to be arrogant, but he was saying there is no melanoma cancer treatment that he has not heard about. Altering medications or taking something in addition to the prescribed course could lead to very serious complications. Therefore, no getting advice from friends!

Guideline three was that the internet is not your friend. In the same line of reasoning as advice from friends, there is a lot of stuff on the internet, and most of it is junk. The doctor asked us not to search for secret home remedies. He stated again, that there were no melanoma cancer treatments that he was unaware of. He stated that we can look at new research that was being done, studies, or other melanoma stories. However, we realized we were not going to find any random melanoma treatment that her doctor did not know about. I often researched melanoma studies and drugs that were being looked at for future clinical studies. Unfortunately, the studies, while they looked promising, were many years off from being able to help Lyn.

The last guideline was regarding diet. We had a conversation about diet because we wanted to know if Lyn needed to be on special food. We learned that Lyn was not being placed on a special diet. He was more concerned with maintaining a healthy weight than a specific diet. He was not opposed to Lyn improving to a healthier diet, but it was obvious that extra doses of flaxseed oil, banana extract, or green tea was not going to cure her melanoma. In fact, he said he wanted to know of anything she was taking because there are some home remedies, natural products, or medications that can actually impact the effectiveness of the cancer treatment. An example was when we found out that the common drug of Pepcid could create a heart arrhythmia because of the cancer medication she was taking.

Listening to the doctor was a commitment that we absolutely stuck to. The doctor said we can listen to what people have to say, or if we see something on the internet, we can come to him and ask his expertise. I was sent a link to a special cancer hospital, and at first glance it sounded almost too good to be true. The stories were incredible! However, when I ran it by Lyn’s doctor he said he had heard about the hospital, and it was, “quack medicine.” It was too good to be true.

It is a bit easy to get sucked into alternate treatments, which is why I feel doctor wanted us to run things through him. When a cancer patient is going through the cancer journey, treatment, and research process, there is a bit of desperation. A cancer patient and their caregiver seek to have a bit of control and try to do something to improve the situation.

However, we found that the best course of action was to trust the doctor, and to take control in areas that would improve our quality of life. This is not to suggest that we did not ask questions, or even object to medication decisions, because we did. We asked plenty of questions, and as explained in the last blog, we came prepared for every appointment. However, once we left the doctor appointment we trusted the decisions we made.

Therefore, we focused on fun with friends and family. We planned vacations and continued dreaming about retirement. We worked on our garden and home improvement projects. We tried to carry on with life the best we could, while sticking to the strict orders tied to her treatment.

As mentioned previously, we could not control the cancer, but we could control how we approached living. This helped us reduce our stress because we knew we did not have to control the treatment. We only needed to focus on ourselves and trust the medical team, which helped our overall happiness.