Monday, March 28, 2011

Part 4 Where do we go from here?

I guess no one knows how he or she will react when finding out their twenty-four year old daughter has cancer. For me, the numbness that set in was counteracted with my mind being thrown into hyper-drive. It was a strange combination. Finding it hard to sit down even for a minute—feeling I should be doing something, anything-- I had the concentration span of a gnat.  I felt driven to hover over Melanie every minute, bringing her soup or juice with her favorite bendy straws, delivering flowers to her room, rubbing her back as she drifted off to sleep, leaving only because I understood that she needed rest to heal from the biopsy surgery.  Reading a book, or newspaper, or even some mindless magazine was impossible. For days, I still did not want to talk to anyone.

During this same time, Chris was just beginning work with the consulting practice where he still works, but he could be home much of the time. It was a blessing in so many ways as he was willing to take the calls from friends and family and run to the drug store for medications or bandages when I did not want to talk or leave the house. His presence also allowed me to walk the dogs and get a bit of fresh air. While I knew that Melanie was mostly in a drug induced peaceful state, I wanted someone in the house all the time—just in case…. What the “just in case” scenario I was worried about, I don’t know.  At night, Chris was the one person I could, and would, talk to and literally cling to in the dark. Our nights were restless but we were in this together.

Still in shock the day after Melanie had come home from her biopsy surgery, we both also felt an urgency to gather information to make the hard decisions to come. Chris was the perfect person to begin to research Melanie’s medical situation. Turning to the internet, he took notes, and began to have some sense of what the next steps would be. During her testing and biopsy, she was being treated at a good hospital, but not one of the big name cancer centers located in Boston. While we liked the doctor who had diagnosed her, and Melanie particularly felt comfortable with him, we did what came naturally to us. Before Melanie’s post-surgery follow-up appointment, Chris sought out other medical opinions from our friends (and their friends) about next steps and began to look for the “best”—the best surgeon, the best oncologist, the best thyroid specialist.

Spreading the net wide, we heard repeatedly that the hospital we were using had a very good reputation for thyroid treatment, and everyone told us that a second opinion was not really necessary. There is one initial treatment for thyroid cancer; the thyroid must be removed, period. So it came down to who would do the surgery and the choices were myriad. There were otolaryngologists, general surgeons, head and neck specialists. All routinely do thyroidectomies.  We then asked about reputations, and while one person’s name came up repeatedly as a fine surgeon, everyone we talked to said he had the worst possible communication skills with patients-- often bringing them to tears with his unsympathetic and abrupt manner. (Later, when Melanie and I went to a thyroid cancer support group, we repeatedly heard the same stories.)

So there it was. Should she go with the surgeon who had a great reputation in cutting, but an awful reputation with patients?  Should she stay at the hospital that had given her fine treatment in her biopsy, or move to a bigger name hospital? Should she stay with the doctor Melanie had come to admire and trust or start over with a new medical team? Oh yes, and who makes the decision--Mom and Dad, or the smart, extremely competent twenty-four year old patient who was our daughter? Delicate discussion ensued between the three of us about what might be the best way to move forward as we tried hard not keep a balance of support and vigilance about the best care.

Accompanying Melanie to follow-up appointments with her surgeon, we sat together with our daughter, the patient, as she asked questions, trying to hold back until she was through. Ultimately it was Melanie’s decision to stay with her surgeon and we were as comfortable with it as we could be with any plan that included slitting her throat (that is the way I thought of it—an image that took forever to shake) to take out the thyroid and the numerous lymph nodes in her neck.

After much talk together, it was decided that Melanie would return to the same hospital and surgery was scheduled for a week later—enough time for the enormity of her situation to begin to sink in for her.

Next—Preparing for surgery…

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